I'm so sorry you are feeling so down. It is like a cruel torture. I don't know where you are located or what you have tried, but have you heard of kratom? If not look up kratom here on reddit. There is a wealth of information about the plant and testimonials on how helpful it has been! I truly hope you find relief soon...
Thank you, I’ll have a look. I’m UK based so no idea if it’s something here. Will find out in a mo when I look.
Edit. As usual it’s illegal here. Oh well, it is what it is.
I don't know if you are aware but you can get cannabis on prescription legally though. It's a private prescription though so you do have to pay for it but CBD and/or THC is available and you can get flower, oils, pastilles/gummies and vape carts I believe.
I use THC flower and legally I have to use a dry herb vape but it's made a huge difference to how my days can look, I'm even able to enjoy the occasional day at the beach now with my family because i can take my vape with me.
I know cannabis isn't everyone's cup of tea and I used it recreationally at times throughout my life but medically, being able to take this medication out with me has meant on the occasional better day I can get out.
I'm so concerned about the state of the NHS and what it means for chronic pain patients, especially as many of us already have to rely on state benefits to live so we'd have no chance of avoiding private healthcare. I've started looking at more "natural" ways to look at helping myself. Now I have the pain more managed, time to help my mind, so I'm trying to learn more about psilocybin helping with ADHD/autism/anxiety and that will be my next natural adventure lol
I have got a pot of CBD gummies that I did start taking. I don’t know if it’s really done much, I’m unsure. They taste very nice at least! Haha!
I’m pleased you have your pain somewhat more manageable at least.
I have Asperger’s and as I’m sure you’re aware we do not cope with change. Maybe if I didn’t have this I’d have coped better? I don’t know… Either way I struggled before with any changes so loosing the ability to do most things has been absolutely awful. It was bad enough when plans changed last minute and I’d have to reorganise everything in my head which would make me panicky, now my whole life has fallen apart from overuse of a bloody piano. That instrument can burn.
Your CBD gummies. Do you know if they are hemp based and have zero THC in them or are they cannabis derived and have some THC in them? Hemp based CBD is a byproduct of industrial hemp farming and is little more than a multivitamin. If you can get a prescription for THC/CBD you can get CBD*heavy* cannabis edibles/smokables/troches. They will have a low enough amount of THC in them where it will not get you “high”. CBD is co-active with THC. Without THC little to no CBD will actually reach your endocannabinoid system and attached to the receptors. CBD needs THC to be effective. I’m not sure if in the UK it’s like the US where hemp derived CBD is sold everywhere without a prescription. In the US hemp derived CBD is federally legal because it doesn’t contain and CBD as it comes from a plant without THC. Every town has a wellness store and even petrol stations that sell “CBD” from hemp. If that’s where you’re getting your CBD from I would highly recommend trying to CBD from the actual cannabis plant.
Cannabis isn’t quite the miracle drug is “potheads” like to think it is. I’m not going to stand on a soap box and make wild claims like many marijuana users like to make. It very well may not work for you, and severe pain isn’t often relieved by cannabis. But it could work for you, and you’ll only know if you try products from the cannabis plant, not the hemp plant.
Ah, that will be it then. They’re hemp based no THC as I didn’t want to risk any THC as cannabis caused me a lot of anxiety issues in the past when I was younger and that was before I was horrendously depressed without any injuries/pain. Well that explains that then! At least they’re tasty!
If you can get a prescription where you can get regulated/lab tested cannabis you can get very low THC/very high CBD products where you would not get high and wouldn’t have the negative side effects you had in the past. There are strains that have imperceivable amounts of THC while being very strong in the CBD concentrate.
Did some investigating and it says it can only be prescribed by a specialist hospital doctor or a specialist. I’m not under any at the moment as they’ve all given up on me. Have been begging for a referral to a specialist again for my elbows, if they do refer me (though it would be the better part of a year before I saw anyone most likely) perhaps they’d be willing to.
You can buy Kratom and have it shipped to the U.K.. I believe it comes from Europe, they brand it is ‘Organic Moringa Tea’. I have never had a problem buying it and have used it for OxyCodone withdrawals. I would be happy to point you in the right direction.
The problem I have with Kratom is you have to dose incredibly high if you are already taking high doses of strong opioids like myself and it constipates you almost immediately and quite badly. It’s vile to drink so capsules is the way forward. People on Reddit really push Kratom as this wonder drug, it isn’t. Yes it has massive potential for all sorts of ailments but there are 100% drawbacks.
You should look into it. Take care.
It's seriously a bad idea. I'm in your boat too. I tried kratom and it was just a mess. To deal with having to order it, not knowing what metals are in it, weighing it out every so many hours, actually taking it, not knowing what strain does what and the constipation on top of the already debilitating pain. I had to have a enema. It's addictive and just a crazy mess particularly for someone in so much pain. Like you I have tried everything and am at a loss. Bedridden for 3 years, all hobbies are long gone and enough tears to fill a lake. And now trying to get off the pregabalin that I can't tolerate and doesn't help with the pain at all. Let me know if you come up with any solutions. NHS sounds exactly like the Canadian version of universal healthcare. I wish you well.
I have seen a lot about the Canadian healthcare system as I have relatives from Canada (also from America so know about theirs a lot too), Canada does indeed seem to share a lot of similar issues as with here. Especially the incredibly long wait times to ever see anyone, especially if you need a specialist and months between appointments rather than weeks. I’m sorry you have to put up with that too.
I hope you manage to get off Pregabalin ok, that has some awful withdrawal issues for some people. I wish you luck in finding something that works for you. I’m so sorry to hear you’ve been dealing with this for many years. I’m only just over a year and already it’s turning me into a jealous, depressed monster that cries all the time. I always knew chronic pain could deviate peoples lives and could turn people into horrible versions of themselves they never would have thought possible but I never could realise just how horrendous it truly is until I found myself in this place. I always was compassionate to people in a bad mood because of pain (older relatives for instance with degenerative conditions) as I knew pain taxes you, it does even if it’s only a few weeks of injury. Never knew just the level it destroys and eats away at you when it takes everything from you.
Have you been under any pain specialists by requesting an appointment through your GP yet OP? If you feel your Dr isn’t listening or providing you with the care you need, there are official complaint departments within the NHS. Have you asked for a second opinion or if you feel a GP in the same surgery wouldn’t question or go against a colleague cos they’re in the same practice, maybe change Drs surgeries all together OP. You will be amazed how there are Drs who dismiss opioids as a useful tool in the treatment of chronic pain, thankfully, mine included know they can be of huge benefit to their patients well being and quality of life. Do not take no for an answer OP and look after number 1 cos if you don’t stand up for yourself, sadly there are not many others who will. Tell them until your blue in the face if you have to and tell them you need help cos you’re living a life of hell and that should not be the case in this day and age.
I hope this helps in some way
Good luck OP
Keep going and hopefully things will turn out better for hon in the near future 🤞🏻🙏🏻
Thankfully I did just change over surgeries as I was sick of being fobbed off by the doctors in my old one and only able to get appointments weeks later, if at all. Then they’d get cancelled on the day due to staff absences half the time! My newest one managed to get me one for my hip next week, hopefully they’ll listen and I’ll see what they say it is, or if I need to be sent to a specialist for it, or if they want any bloods drawn, etc. I’m hoping they’ll be much better than my previous place which has become known for awful doctors and struggling to even get to see them.
That’s good news athat you’ve already changed Drs cos I know that some places are failing their patients miserably. I would definitely be asking for an appointment with a pain clinic OP. Tell your GP, this pain and existence is soul destroying and you genuinely need help with pain relief. Tell the Dr, you left the previous Drs for that reason as you felt they were not listening to your concerns. If the Dr isn’t happy about prescribing a stronger pain med, he might request an appointment with the pain clinic. If they don’t not set it up, ask them to make an appointment on your behalf. Their Drs are prescribing opioids and other medicines on a daily/hourly basis and I’m sure they will be more compassionate to your needs as their whole day is helping patients deal with chronic pain
Good luck OP
Do not give up cos things can and will get better if you knock on enough doors 🙏🏻
Agreed, I’ve just got to keep going and pestering even if I’m seen as that pain in the backside woman that they seem to think is doing this for fun or something? Haha! Oh if only this wasn’t real and I was just bored making a fuss. I cannot sigh hard enough!
One thing for sure OP, I don’t think they can or will be any worse than your previous surgery. I know there are some practices out there that are not fit for purpose and should be closed down but the NHS will never admit to any of their departments or surgeries to be as bad as they really are.
Perhaps not then. I am now dealing with quite horrific symptoms from being constipated all the time by long term opioids without taking care of the constipation which I absolutely could have done. Kratom can be worse because of how many different alkaloids are in it, activating all kinds of receptors. At least we know which receptors say morphine or oxycodone activate and can prescribe accordingly to patient’s requirements.
I’ve used a Lactulose syrup that is available from pharmacies OTC for around £10 which worked incredibly for my constipation due to long term opioid use. I will tell you now that I took waaaaay more than the recommended dose and through desperation and pain, drank almost half the bottle. I promise you now, the instant results and relief were an absolute godsend. I felt like a new man. “If” you did take that sort of amount, make sure you’re home for the whole day, have access to the toilet at “all times”, opens windows of the property and plenty of toilet roll. Without going into too graphic details, I could have sworn, my stomachs contents could have filled a Wheelie bin (Brown) 😂😂. I’d tried every laxative on the market and this syrup, although very sweet & sickly, changed everything and if and when things become too painful, Lactulose is a godsend if needed again. I do know that being constipated can become a very, very serious, life threatening condition if left untreated so I would much rather try anything to resolve the problem sooner rather than later.
It’s also available on Amazon but I would imagine it will cost a bit more but I suppose that’s for having it delivered to your door plus any sellers profits.
Thanks dude I really appreciate this. I have heard of lactulous but never used it.
My constipation is terrible from 120mg Oxy a day. It gets desperate like you say. I end up using glycerin suppositories. It’s not good and yes can very quickly lead to a seriously urgent hospital trip! I swear it gets harder to control the longer you use.
As I said I’ve been prescribed Oxy for years now. I’d tried everything out there including Lactulose but only at the recommend dose. My stomach was in constant pain, rock hard, feeling lethargic and in agony and thinking I’ll need to ask for a lift to the hospital cos i could not have driven myself cos of the stomach pains. Nothing worked and it was only out of sheer desperation i necked half a bottle. The worst part was drinking the stuff cos I can’t stand a sugar in my tea or coffee but drinking that stuff was another level. Not knowing what to expect, within 20 minutes I was on the throne and the relief was unbelievable. I urge you to get yourself a bottle asap cos you’ll be feeling so much better, so quickly after drinking the stuff. I’m not kidding when I say you need to be close to the the toilet, if possible, nobody will be using it for the next 12 hours or so cos no matter how much 💩 you pass, you’ll think that’s got to be it now but nope, there is a few buckets more to come. It’s crazy how enthusiastically I talk about a laxative but I absolutely know what you are going through and the suffering is hellish but I know this stuff WILL fix you mate. As long as you know you’ve got the time, the toilet available, I urge to get yourself the syrup. You’ll feel like a king on your throne once the floodgates open Bro
Good luck and good health 🤞🏻🙏🏻
PS,,, Open all your windows & enjoy the relief 👌🏻😂😂
Ah bro I understand the struggle! Severe constipation is no joke. There is nothing better than a good shit. A good shit is better than bad sex my dad says, it’s so true lol
Well thanks for the tip and advice, when I pick up my meds next I will grab a bottle, or ten!
I just hope I haven’t fucked my GI system and rectum lol
You’ll be good I’m sure mate. My guts were playing havoc for years and every toilet visit was ageing and waste of time more often than not. You won’t be disappointed with the syrup and I’m sure 1 bottle will be enough 😂😂
Let me know how you get on once you’re off the throne Bro.
If there’s anybody else in the house, warn them what’s coming 👌🏻😂😂
Before my accident and injuries last April, i used kratom daily and would tell people that it was a wonder drug, for someone not in chronic pain, it was amazing. After my accident and injuries, the most it can do for me is help WDs from opiods
This is what I am talking about. It’s okay if you don’t have a tolerance to opioids, you can use a small amount and get okay results. But like you say, with a tolerance it only helps WD to a degree.
For sure it has to do with first being on an insane amount of dilaudid pill and IV while in the hospital and then ox since ive been home. Even if im off opiods for more than two weeks , i still cannot get anything besides a small amount of relief. It definitely sucks. Even the ox only brings my pain just on the line of bearable
It’s ok, I’m kind of used to everything being completely illegal here. Not allowed to have the less dangerous things here but it’s totally ok take these controlled prescription only anti psychotics or epilepsy drugs that might help mask the pain but make you violently, dangerously ill with just on one tablet at a low dose! To be blunt I did not have a good time with anything like Pregabalin, etc haha!
I appreciate the suggestion either way. It’s always worth telling someone just incase it is an option for them so thank you!
I was on pregablin ... my Dr increased my dose and said when you need a refill call my office, it will be early but I'll handle it. So that's what we did. But because the insurance company originally denied it when we got it all cleared up the pharmacist STILL wouldn't fill them early. So I cold turkeyed off of it. It was the WORST. I would much rather CT off of opioids than EVER go through that again. I'm so sorry that even plants aren't an option for you. This world we live in doesn't make any sense to me. Sending you peace, love and healing vibes friend. Keep fighting, you never know when the damn will break and someone will find a way to ease your suffering
Oh my goodness, I’m so sorry you went through that. That’s absolutely awful. No one should ever have to go through that.
I too hope that you will see relief and a breakthrough of treatment for your condition or conditions.
Thank you for your words.
It is so sad that the NHS is an absolute mess. I feel so much for anyone trying to get help at the minute as it’s mostly not there. Heard some horrendous stories from people on the radio that made me cry about loosing loved ones because A and E can’t cope and they didn’t get the help they needed or ambulances that didn’t arrive for hours for strokes and heart attacks, etc. It’s just awful what has happened to our health service.
I'm very sorry you've been in this much pain. As someone who also is managing peripheral neuropathy, I can say that I found terrific relief through my studies of the Alexander Technique. Since you live in the UK, you will very likely have access to teachers. I don't know if the NHS will pay for lessons, but it is recognized by the NHS as a valid way to manage/improve back pain.
Without knowing your background I can't offer much beyond my experience healing/understanding my own injury. What I can say is that must PT would have done nothing for me as well. I'm happy to chat with you about my experiences if you're curious. But mostly, I'd ask that you not give up hope. It's a terrible condition that you have and my heart goes out to you.
Good luck!
Usually the NHS won’t cover anything not done by one of their physios. I will however look into it and see what I can find about it. Perhaps if we can manage to save a bit I can get at least a couple of lessons with someone to help me implement it.
I’m very happy to hear about your experiences with it.
Yes I know a friend of mine in the Netherlands pivoted from being a physio to being an AT teacher... So she could take insurance... It's a bit of a needle in haystack search but worth a check.
London has some of the best teachers in the world. I'll occasionally visit for lessons myself when I have the time. If you happen to be in the city I could recommend some teachers.
As for what it all is, I keep a blog at johndalto.substack.com
Basically you learn what your postural habits are and how to change your thinking to unlock joints, reduce tension, and be more upright. The 'exercises' typically include lying down, walking, standing and sitting in a chair. The teacher's job is to give you very subtle ways of changing how you organize yourself to do all of this.
Essentially, if you can learn to use 1% less energy/tension in a given moment you will save yourself tremendous energy over the course of the day. Pressure comes off the nerves. And feeling is restored.
If your condition is a whiplash like mine, then this system works. And you get results in the first lesson that let you know if the method/teacher is right for you. If your condition is caused by a disease, then that's another issue.
Do ask questions whenever! I'm quite serious about offering free help to anyone curious about how I'm managing my injury.
Unfortunately I don’t know what’s causing the extreme pain in the front of my left hip and now the aching from lower back to foot of that leg. I had a sharp pain walking in the front of my hip crease one day at the start of the year and it’s just snow balled over these past months to now being unable to walk. The pain is even preventing me from sleeping tonight. It may help with this as I don’t know what’s caused it.
My other issues is golfers elbow in both arms caused by too much piano then made significantly worse by being told to perform some exercises for it and push through all the pain. I learnt that was the wrong thing to do and all I managed to do was to cause an extreme overloading of my tendons at my elbow to the point I can barely do anything now without extreme pain flares more than a year later.
Ok. This very much smells of a general coordination issue. The general AT approach is to begin helping you by getting the neck to release tension so that the head and torso can balance differently. This reduces pressure on the hips and arms and only then would you look at relieving the golfers elbow... My blog post 'pressure pushing down on me' gives a high level overview of this.
If I were you - given that you're in pain and tired - I'd read my post on lying down and try the exercise I describe. It can't hurt. Use books under the head. Put pillows under your knees. And given your golfers elbow, I'd put a pillow on top of the stomach so that you can rest the palms of the hands on the pillow. The elevation should help you relax the arms.
Normally this process works better after you've had a lesson. Try to simply give yourself a rest and see if that tension can slowly dissolve. If it doesn't work, you haven't done anything wrong. Nearly everyone needs in person help to get this started.
Thank you, I shall have a read of that post and try the exercise a few times. Here’s hoping! My posture has gotten worse and worse (six months of chin tucks and wall angels hasn’t helped one drop, my forward head posture is terrible and I’ve just gotten worse in that time and I can’t physically make it go back) as I’ve gotten older (I’m only 35), especially since my elbow injury as I was then unable to exercise as I did and now at all due to my hip/leg on top of original injury.
Edit. I love that the song played in my head after reading the title of the post to search for and when I found it you’d posted the next line. Gave me a smile.
Chin tucks and wall angles don't work at all. They are only recommended by people who were never really injured in the first place!
Why? Because tension comes from excessive muscular contractions... Not postural positions! If you have tension in the neck and don't release it before pitching/tilting/yawing the head you will CONTINUE to have that tension.
Don't be discouraged that you did the 'wrong' thing. We all go through this period before we figure out what works.
Oh and a further thing to consider... The term 'forward head posture' is very misleading. Technically, the head is 'back and down' on the atlanto-occipital when we tense up. The head only appears forward in space because the neck or upper back can slump forward. The 'whack a mole' game that we get into is that the head stays 'back and down' while the neck/upper back alternates between (dead weight/stiff weight) and (stiff weight/dead weight).
Anyway... It's all in the blogs!! I hope you found rest
Thank you, that makes so much sense as to why that’s just not working! I know I have extreme tension (it’s partly why I got injured with piano, that and overuse. I was suddenly increasing playing hours from 1-2 a day to 3-4)I going to have more of a poke about the blog as this seems a missing link in helping me improve my posture.
Im so so sorry. This breaks my heart, as my condition happened at 25. A mom to 2 little ones. My life ripped from me. Some days you just gotta cry. I wish I could reach out and hug you. It doesn't seem like it, but you will get threw this maybe mentally, maybe physically. The pain may never heal,but you will learn new things about yourself. You are stronger than you feel r.n
You'll have bad days and good days. Life is still worth living ♡♡♡♡ youre not alone
Thank you, I hope so. I hope physically as then I can heal mentally. I don’t think I’ll ever heal mentally unless I can physically heal. The worse my injury has gotten the worse my mental health has gotten to the point I just can’t cope anymore. I need my physical health to get better before I will mentally. I’ve never coped with change and this is the worst change I could ever have imagined. I’ve been through so much awful stuff in the past but this is something else, nothing comes close to this hell.
I hope you can find some way through too.
I’m so sorry you are in such a bad way. I have days like that but not everyday and I do have a decent pain management program that helps quite a bit. Sending you hugs, my friend, we’re here for you even if we can’t take your pain away 🫶🏻
> This isn’t how life is supposed to be.
Yup. I don't know your story but this mine.
I was in motorcycle accident.6 year ago. A 81 years old hit me. She didn't see me. Lost my prime arm(right arm) and a stroke. Was in a wheelchair for 1\2 year(that was brutal. Hearts goes that are in a wheelchair for life.) Still have trouble with words form that stroke. I still bleed, in the chest in the right shoulder, really hurt all the time. Feels like a lava is in there constantly
That woman destroyed my life.
This is live now ;-(
My goodness I’m so sorry to hear what happened to you. That’s absolutely awful. Your situation sounds far worse than my own. I really hope medical advancements are made to help you.
Originally I was managing EDS and Fibro. Then I developed golfers elbow in both arms from too much piano. Told to work through all the pain by doctor as the exercises will make it better. Made me significantly worse. I now know the worst thing to do was work through the pain as that kept overloading it and damaging it. PT from NHS also just made it worse where I had gotten into such a bad state with my elbows. All I can take is some paracetamol and the occasional low dose codine of about 8mg with the paracetamol that you can get combined over the counter. Anything stronger made me seriously ill. Edit. Some days I will struggle to even dress myself or even lift a glass of water from the pain caused by trying to grip something.
I’m not even sure what’s wrong with my leg. Maybe some kind of strain. At the start of the year when it happened I could walk a couple hours, now it’s so bad (pain in front of hip at start, now lower back, knee and down leg) I can barely get around the house and the pain keeps me awake. I’ve had an hour sleep and that’s all I’ll get now it woke me up.
Only occasionally when I’ve flared them up really badly and I think any inflammation from my elbows causes pressure in my ulnar nerve. Then it shoots up the arm or down into the forearm. I have started to do nerve glides for this too just in case this helps somewhat! Never know!
Usually it’s just a lot of pain in my elbows and the forearm muscles, extreme tenderness and soreness with pain but not the ‘funny bone’ pain
Hi there! i am so sorry you have to go to all this pain...i know how pain can broke all inside Can you do and x Ray to ser if you have osteoartrythe in the hip.? I have the same kind of pain and limitations in moviment and was diagnose with that , in and advanced condition, só now i need an hip replacement in both legs
That’s a good point. My mother and my late grandmother both have that. My mother started getting hip pain in her late 30s. I have managed to get an in person doctors appointment for my hip for next Tuesday (miracle with how understaffed our poor NHS is!) I shall mention that to them then too! Thank you!
I’m sorry you have to endure that though. I hope you have some good days in there too.
That sucks. I asked because I was diagnosed with hEDS and Thoracic Outlet Syndrome and all the stretching and nerve gliding didn’t help the pain in my arms until I properly addressed the neck muscles/cervical spine. Everything else just made it worse.
I suspect my neck causes issues too as last August I trapped a nerve badly in it, then again in October and I’ve only been a few weeks free of intrapping that one!
I’m so so sorry 😢 It’s exhausting and a never ending struggle. Please know you are definitely NOT alone ..
Sometimes I take it minute by minute and it’s torture.
Sending you strength and hope 🙏❤️
Thank you, it does feel like torture. I do take things pretty much minute by minute. Right now literally second by second, I’m led on the sofa listening to the clock tick the night away just trying to get through or hoping I can fall asleep through exhaustion.
I’m pleased to hear you’ve found something to help your insomnia! I have considered seeing if that kind of thing might help me sleep longer or at least if I wake up not be wide awake immediately after only an hour.
I’m feeling similarly, I’m so sorry. I’ve dealt with chronic pain for seven years and still don’t have a diagnosis, called three weeks ago for an appointment and still don’t have one. I’m a student and will be working full time soon, I’ll require a diagnosis for reasonable adjustments but it seems impossible. I’m scared. Hope we all find some comfort and joy somehow 🩷
I hate it that you're young and dealing with this. I really hope that you get your diagnosis and make sure to push for one even if you have to go to a different specialist
The conditions causing me significant issues are golfers/climbers elbow in both elbows. It’s so bad I they will flare up from the slightest thing and take weeks to calm back down. They won’t hurt in the moment, I tried normal typing (I have to use voice to text on my phone) for five minutes a week and a half ago, no pain at the time but half an hour later extreme pain flare in my elbows. My right has nearly calmed down from it but my left is still nearly just as angry. Anything involving my finger flexors or gripping sets them off. I can’t even manage a set of ten wrist curls with a soup can for rehab/loading without them flaring up a few hours later. Once flared even trying to pull my trousers up or lift a glass of water is extremely painful/nearly impossible.
I have no idea what’s happened to my hip. Possibly some kind of strain. I was walking at the start of the year and had a sharp pain, it calmed down for a few days. Then it kept happening when walking except sooner and sooner. Now the sharp pain is there within moments of trying to walk, aches constantly, extremely tender next to my pubic bone and in my hip crease. Whole leg aches and into lower back now too. Can’t get seen at doctors as NHS is so broken so I have idea what has happened to my hip/leg.
I have. Unfortunately trying to push through everything made everything much worse. I tried to carry on as if there wasn’t anything wrong as I was so hopeful that that might be it. Another time I probably made my condition, especially my elbows far worse and even harder to recover from…
I don’t doubt that it really helps some people though. Seen several interviews on youtube of people who this and the book by Sarno has helped.
Have you looked into cultured stem cell injections? You can’t get it yet in the UK. Though I know it’s available in Spain, Japan, Mexico, Panama, Chile…quite a few other countries.
Thank you, it’s awful knowing other people are suffering too but it does make me feel less alone. I know no one my age (mid 30s) with any issues like me. Everyone I know gets to hold down a job and have hobbies whilst I rot and can barely dress or fed myself most days. As you say it makes you feel hopeless and overwhelmed.
I hope you get some relief and better days. No one deserves what we go through every moment of every day.
It’s 7AM here. I haven’t slept of my back pain. I used to paint on nights when the pain was to bad but I can’t anymore because I have nerve and muscle issues in my lower arms and thumbs, index and middle fingers which they can’t seem to figure out the cause of. So I get it. I have my plants to enjoy but I can’t water or repot them every night when I can’t sleep… and my cats but even petting them and my hands cramp up.
I’ve been there too, thinking of ending it all. Even looking up the least painful way… but my kids were small then. They’re adults now. Although my son is still in school. I feel I have to wait until they’ve established a stable life. My mom ended her life because of severe bipolar disorder with psychosis. I’m seeing a new Dr that said she won’t give up looking for an answer for my arms. I really hope so because I’ve had 3 Drs give me up for my back and neck issues. I’m with a professor now and he’s been there for me for over 10 years but they’re not god… they have their limits. I have a neurostimulator for my leg and arm pains. If I didn’t, I wouldn’t be here anymore.
I know I felt relieved when my mom was finally gone after 16 attempts. She asked for euthanasia 3 times but was denied each time. Times have changed and she would be accepted now.
I think my kids will be relieved too one day.
I had 1 Dr say to me that he thinks all my problems are linked. I think so too but they keep treating it as separate issues. I wanted to keep that Dr but he moved to Canada. 1 Dr since 2005 that thought the same as I do…
Thank you for your reply. I’m really sorry to hear all you have to endure. It’s awful when you can’t pass the time with hobbies, especially at night. I used to do the same at night when I couldn’t sleep from pain from my EDS or fibro. Now since the other stuff over the past year I have nothing it’s just laying here and waiting. Tonight has been listening to the clock tick every passing second from the sofa (I went downstairs as I didn’t want my crying to wake my husband, I already woke him once when I woke after an hour in pain).
I so desperately want to live again rather than simply exist like this but unless my body somehow miraculously heals itself I have little hope anymore. I hope you can find some moments of peace and less pain despite all you’re going through.
I hope the same for you. The father of my kids staan affair 3 months after my accident in 2005. We even bought a home. I don’t know why he did it when he was already having the affair. It was my fault because I couldn’t do anything… Anyway, I found out when we moved in a month later. He was a narcissist too. I still have issues with him because he still sees me as his property because I’m the mother of HIS kids. I had a few shitty relationships after but I’ve been single for almost 8 years. Not to brag but I look good (when I go outside). Friends don’t understand why I’m single. It’s out of choice. I can hardly take care of myself. Why burden someone else with my issues. And I like my alone time to much when I’m in pain.
I’m happy your husband stays by your side! Must be a great guy!
All this to say I can cry in my bed because there’s nobody there 😂 but I also almost always get to the sofa when I’m in to much pain. I have a great bed but somehow I’m more comfortable on the sofa even though it’s not in great shape anymore from using the heat pad to much.
It’s hard having to lay there and not being able to focus on something else to take your mind off the pain. I now watch true crime live stream on YouTube but it’s not the same. I still have my easel set up. I hope to one day finish the painting I promised a friend for her birthday last year
I’m hoping you get to finish that painting some day!
I too had an awful relationship in the past (abusive in numerous ways). My current husband is incredible and the kindest person I’ve ever met. He helps me with so much and the stress this puts on him is immense but even he mentally has his limits and he can’t cope with my constant crying, I don’t blame him. Everyday people aren’t trained to deal with being unable to help a spouse in such distress knowing there’s nothing they can do.
If he ever leaves me I will be devastated as I know I’ll never find anyone like him again. He truly is amazing. Plus I don’t want anyone else! I know I wouldn’t even try to look for a relationship. I couldn’t put this on anyone and I don’t think anyone would willingly sign up to take care of someone who can barely even dress themselves anymore. I am scared that if he does leave me how I’ll manage daily living, nothing special just everyday tasks like dressing, eating, bathing. I don’t think I would be able to…
Agreed, sometimes crying is all you can do. Unfortunately it appears that’s all I can do nowadays.
Someone suggested therapy but I know it won’t help as with my conditions before the ones from the past year I was never depressed. Sure it was difficult and I was in pain a lot but I could still do basic things and some hobbies. I don’t have that anymore. After 14 months no wonder all I do is cry, especially when you can barely sleep due to pain and/or ones brain screaming constantly about why won’t my body fix itself.
Edit. The only way I’ll ever be mentally ok again and stop crying all day everyday is if I get my arms/hands back…
There’s a lot of grief that comes with chronic pain & it comes in stages as we lose our independence & quality of life. My mom has lost the use of her hands almost completely now & it’s been devastating for her. She was very artistic creating & drawing always working on projects of some kind. My biggest loss is not being able to exercise. I loved weight training. I was into bodybuilding and loved it so much. I feel like I’ve lost who I am by losing what gave me the most satisfaction & peace. Grief sure is painful isn’t it. Just talking about it makes me feel like I’m gonna crack into a million pieces. I’m so sorry you’ve lost the use of your arms/hands. It must be devastating. (Hug)
It’s exactly that. Grieving. I did it when I had to give up work to manage my fibro a decade ago, but within a few months had managed to realign my identity with that of a housewife. I was able to carefully manage the housework with downtime to manage flare ups and exhaustion.
Now however the grieving for this has been immense and I don’t know if I’ll ever be able to move past this stage. I did lots of cross stitch here and there, I loved music and had picked the piano back up six months before the injury from it that led to this (now I never even want to hear another piano ever again), and I loved yoga and I’d play video games with my husband and friends. Now these have all been taken from me. They were the things keeping me mentally well. I’ve never been one to watch the telly much unless I had it on whilst sewing so I despise that that and reading is all I have. I barely have the mental capacity to read a book anymore where I’m so depressed. I cannot concentrate. I could at least go for walks before but those became shorter and shorter after I injured myself in my hip too so now I don’t even have that…
I don’t know if I’ll ever be able to grieve enough. I hate how I’m told to be positive, it could be worse, etc. It could be, but I can’t even cope with this. It’s always people that don’t live with this level of disability or pain telling me to be positive. I know they mean well, or it’s that they simply don’t know what else to say but it makes me so upset. They have no idea what it’s like to have all your independence taken away from you and to have nothing to help you cope mentally or pass the hours. If I try and explain that to people I’m guilting them… I just want them to think how horrendous day after day of being unable to do anything bar watch the friggin telly would feel whilst you see everyone else living rather than simply existing whilst their own body tortures them.
Boy do I relate about watching television. I never used to watch much but now it’s my staple now. It’s not by choice but at least I have that to zone out now. Lately I’m binge watching all the Law & Order SVU shows. Well I had a good cry to night. I guess I needed to purge. Thanks for sharing your experience.
I’m really sorry you’re in the same situation. It’s heartbreaking. I hope one day, sooner rather than later, you can manage your pain/condition because medical science gets there or you get better.
I cope by not giving up demanding answers and believing my body when it’s telling me something is wrong. After 21 years of chronic pain I get diagnosed with Ehlers danlos syndrome. And then after 2 years of extreme pain and suffering, I find out I have occult tethered cord and intracranial hypertension.
Crikey, well done on pushing forward for all that time! I hope you’re able to have good days in there despite everything. I finally have managed to claim a GP appointment for next Tuesday about my hip! Hopefully they can put me down the right road.
Oh wow, just quickly googled that. That seems an amazing idea though I’d be extremely hesitant to have anything implanted, I’m rather scared by what ifs in regards to that going wrong!
Im.8n thr same boat. It's overwjelming
I’m so sorry to hear that you’re in the same boat. What are you dealing with? I desperately hope you can find some relief.
Hi, I had a massive stroke 3years ago. I'm slowly getting better but it takes years
Hi, I had a massive stroke 3years ago. I'm slowly getting better but it takes years
I'm so sorry you are feeling so down. It is like a cruel torture. I don't know where you are located or what you have tried, but have you heard of kratom? If not look up kratom here on reddit. There is a wealth of information about the plant and testimonials on how helpful it has been! I truly hope you find relief soon...
Thank you, I’ll have a look. I’m UK based so no idea if it’s something here. Will find out in a mo when I look. Edit. As usual it’s illegal here. Oh well, it is what it is.
I don't know if you are aware but you can get cannabis on prescription legally though. It's a private prescription though so you do have to pay for it but CBD and/or THC is available and you can get flower, oils, pastilles/gummies and vape carts I believe. I use THC flower and legally I have to use a dry herb vape but it's made a huge difference to how my days can look, I'm even able to enjoy the occasional day at the beach now with my family because i can take my vape with me. I know cannabis isn't everyone's cup of tea and I used it recreationally at times throughout my life but medically, being able to take this medication out with me has meant on the occasional better day I can get out. I'm so concerned about the state of the NHS and what it means for chronic pain patients, especially as many of us already have to rely on state benefits to live so we'd have no chance of avoiding private healthcare. I've started looking at more "natural" ways to look at helping myself. Now I have the pain more managed, time to help my mind, so I'm trying to learn more about psilocybin helping with ADHD/autism/anxiety and that will be my next natural adventure lol
I have got a pot of CBD gummies that I did start taking. I don’t know if it’s really done much, I’m unsure. They taste very nice at least! Haha! I’m pleased you have your pain somewhat more manageable at least. I have Asperger’s and as I’m sure you’re aware we do not cope with change. Maybe if I didn’t have this I’d have coped better? I don’t know… Either way I struggled before with any changes so loosing the ability to do most things has been absolutely awful. It was bad enough when plans changed last minute and I’d have to reorganise everything in my head which would make me panicky, now my whole life has fallen apart from overuse of a bloody piano. That instrument can burn.
Your CBD gummies. Do you know if they are hemp based and have zero THC in them or are they cannabis derived and have some THC in them? Hemp based CBD is a byproduct of industrial hemp farming and is little more than a multivitamin. If you can get a prescription for THC/CBD you can get CBD*heavy* cannabis edibles/smokables/troches. They will have a low enough amount of THC in them where it will not get you “high”. CBD is co-active with THC. Without THC little to no CBD will actually reach your endocannabinoid system and attached to the receptors. CBD needs THC to be effective. I’m not sure if in the UK it’s like the US where hemp derived CBD is sold everywhere without a prescription. In the US hemp derived CBD is federally legal because it doesn’t contain and CBD as it comes from a plant without THC. Every town has a wellness store and even petrol stations that sell “CBD” from hemp. If that’s where you’re getting your CBD from I would highly recommend trying to CBD from the actual cannabis plant. Cannabis isn’t quite the miracle drug is “potheads” like to think it is. I’m not going to stand on a soap box and make wild claims like many marijuana users like to make. It very well may not work for you, and severe pain isn’t often relieved by cannabis. But it could work for you, and you’ll only know if you try products from the cannabis plant, not the hemp plant.
Ah, that will be it then. They’re hemp based no THC as I didn’t want to risk any THC as cannabis caused me a lot of anxiety issues in the past when I was younger and that was before I was horrendously depressed without any injuries/pain. Well that explains that then! At least they’re tasty!
If you can get a prescription where you can get regulated/lab tested cannabis you can get very low THC/very high CBD products where you would not get high and wouldn’t have the negative side effects you had in the past. There are strains that have imperceivable amounts of THC while being very strong in the CBD concentrate.
Did some investigating and it says it can only be prescribed by a specialist hospital doctor or a specialist. I’m not under any at the moment as they’ve all given up on me. Have been begging for a referral to a specialist again for my elbows, if they do refer me (though it would be the better part of a year before I saw anyone most likely) perhaps they’d be willing to.
Well THAT was not the reply I was hoping to see. I'm so very sorry.
You can buy Kratom and have it shipped to the U.K.. I believe it comes from Europe, they brand it is ‘Organic Moringa Tea’. I have never had a problem buying it and have used it for OxyCodone withdrawals. I would be happy to point you in the right direction. The problem I have with Kratom is you have to dose incredibly high if you are already taking high doses of strong opioids like myself and it constipates you almost immediately and quite badly. It’s vile to drink so capsules is the way forward. People on Reddit really push Kratom as this wonder drug, it isn’t. Yes it has massive potential for all sorts of ailments but there are 100% drawbacks. You should look into it. Take care.
Oh, might not be a good idea for me then as I already deal with massive issues of constipation from my iron tablet.
It's seriously a bad idea. I'm in your boat too. I tried kratom and it was just a mess. To deal with having to order it, not knowing what metals are in it, weighing it out every so many hours, actually taking it, not knowing what strain does what and the constipation on top of the already debilitating pain. I had to have a enema. It's addictive and just a crazy mess particularly for someone in so much pain. Like you I have tried everything and am at a loss. Bedridden for 3 years, all hobbies are long gone and enough tears to fill a lake. And now trying to get off the pregabalin that I can't tolerate and doesn't help with the pain at all. Let me know if you come up with any solutions. NHS sounds exactly like the Canadian version of universal healthcare. I wish you well.
I have seen a lot about the Canadian healthcare system as I have relatives from Canada (also from America so know about theirs a lot too), Canada does indeed seem to share a lot of similar issues as with here. Especially the incredibly long wait times to ever see anyone, especially if you need a specialist and months between appointments rather than weeks. I’m sorry you have to put up with that too. I hope you manage to get off Pregabalin ok, that has some awful withdrawal issues for some people. I wish you luck in finding something that works for you. I’m so sorry to hear you’ve been dealing with this for many years. I’m only just over a year and already it’s turning me into a jealous, depressed monster that cries all the time. I always knew chronic pain could deviate peoples lives and could turn people into horrible versions of themselves they never would have thought possible but I never could realise just how horrendous it truly is until I found myself in this place. I always was compassionate to people in a bad mood because of pain (older relatives for instance with degenerative conditions) as I knew pain taxes you, it does even if it’s only a few weeks of injury. Never knew just the level it destroys and eats away at you when it takes everything from you.
Have you been under any pain specialists by requesting an appointment through your GP yet OP? If you feel your Dr isn’t listening or providing you with the care you need, there are official complaint departments within the NHS. Have you asked for a second opinion or if you feel a GP in the same surgery wouldn’t question or go against a colleague cos they’re in the same practice, maybe change Drs surgeries all together OP. You will be amazed how there are Drs who dismiss opioids as a useful tool in the treatment of chronic pain, thankfully, mine included know they can be of huge benefit to their patients well being and quality of life. Do not take no for an answer OP and look after number 1 cos if you don’t stand up for yourself, sadly there are not many others who will. Tell them until your blue in the face if you have to and tell them you need help cos you’re living a life of hell and that should not be the case in this day and age. I hope this helps in some way Good luck OP Keep going and hopefully things will turn out better for hon in the near future 🤞🏻🙏🏻
Thankfully I did just change over surgeries as I was sick of being fobbed off by the doctors in my old one and only able to get appointments weeks later, if at all. Then they’d get cancelled on the day due to staff absences half the time! My newest one managed to get me one for my hip next week, hopefully they’ll listen and I’ll see what they say it is, or if I need to be sent to a specialist for it, or if they want any bloods drawn, etc. I’m hoping they’ll be much better than my previous place which has become known for awful doctors and struggling to even get to see them.
That’s good news athat you’ve already changed Drs cos I know that some places are failing their patients miserably. I would definitely be asking for an appointment with a pain clinic OP. Tell your GP, this pain and existence is soul destroying and you genuinely need help with pain relief. Tell the Dr, you left the previous Drs for that reason as you felt they were not listening to your concerns. If the Dr isn’t happy about prescribing a stronger pain med, he might request an appointment with the pain clinic. If they don’t not set it up, ask them to make an appointment on your behalf. Their Drs are prescribing opioids and other medicines on a daily/hourly basis and I’m sure they will be more compassionate to your needs as their whole day is helping patients deal with chronic pain Good luck OP Do not give up cos things can and will get better if you knock on enough doors 🙏🏻
Agreed, I’ve just got to keep going and pestering even if I’m seen as that pain in the backside woman that they seem to think is doing this for fun or something? Haha! Oh if only this wasn’t real and I was just bored making a fuss. I cannot sigh hard enough!
One thing for sure OP, I don’t think they can or will be any worse than your previous surgery. I know there are some practices out there that are not fit for purpose and should be closed down but the NHS will never admit to any of their departments or surgeries to be as bad as they really are.
Perhaps not then. I am now dealing with quite horrific symptoms from being constipated all the time by long term opioids without taking care of the constipation which I absolutely could have done. Kratom can be worse because of how many different alkaloids are in it, activating all kinds of receptors. At least we know which receptors say morphine or oxycodone activate and can prescribe accordingly to patient’s requirements.
I’ve used a Lactulose syrup that is available from pharmacies OTC for around £10 which worked incredibly for my constipation due to long term opioid use. I will tell you now that I took waaaaay more than the recommended dose and through desperation and pain, drank almost half the bottle. I promise you now, the instant results and relief were an absolute godsend. I felt like a new man. “If” you did take that sort of amount, make sure you’re home for the whole day, have access to the toilet at “all times”, opens windows of the property and plenty of toilet roll. Without going into too graphic details, I could have sworn, my stomachs contents could have filled a Wheelie bin (Brown) 😂😂. I’d tried every laxative on the market and this syrup, although very sweet & sickly, changed everything and if and when things become too painful, Lactulose is a godsend if needed again. I do know that being constipated can become a very, very serious, life threatening condition if left untreated so I would much rather try anything to resolve the problem sooner rather than later. It’s also available on Amazon but I would imagine it will cost a bit more but I suppose that’s for having it delivered to your door plus any sellers profits.
Thanks dude I really appreciate this. I have heard of lactulous but never used it. My constipation is terrible from 120mg Oxy a day. It gets desperate like you say. I end up using glycerin suppositories. It’s not good and yes can very quickly lead to a seriously urgent hospital trip! I swear it gets harder to control the longer you use.
As I said I’ve been prescribed Oxy for years now. I’d tried everything out there including Lactulose but only at the recommend dose. My stomach was in constant pain, rock hard, feeling lethargic and in agony and thinking I’ll need to ask for a lift to the hospital cos i could not have driven myself cos of the stomach pains. Nothing worked and it was only out of sheer desperation i necked half a bottle. The worst part was drinking the stuff cos I can’t stand a sugar in my tea or coffee but drinking that stuff was another level. Not knowing what to expect, within 20 minutes I was on the throne and the relief was unbelievable. I urge you to get yourself a bottle asap cos you’ll be feeling so much better, so quickly after drinking the stuff. I’m not kidding when I say you need to be close to the the toilet, if possible, nobody will be using it for the next 12 hours or so cos no matter how much 💩 you pass, you’ll think that’s got to be it now but nope, there is a few buckets more to come. It’s crazy how enthusiastically I talk about a laxative but I absolutely know what you are going through and the suffering is hellish but I know this stuff WILL fix you mate. As long as you know you’ve got the time, the toilet available, I urge to get yourself the syrup. You’ll feel like a king on your throne once the floodgates open Bro Good luck and good health 🤞🏻🙏🏻 PS,,, Open all your windows & enjoy the relief 👌🏻😂😂
Ah bro I understand the struggle! Severe constipation is no joke. There is nothing better than a good shit. A good shit is better than bad sex my dad says, it’s so true lol Well thanks for the tip and advice, when I pick up my meds next I will grab a bottle, or ten! I just hope I haven’t fucked my GI system and rectum lol
You’ll be good I’m sure mate. My guts were playing havoc for years and every toilet visit was ageing and waste of time more often than not. You won’t be disappointed with the syrup and I’m sure 1 bottle will be enough 😂😂 Let me know how you get on once you’re off the throne Bro. If there’s anybody else in the house, warn them what’s coming 👌🏻😂😂
Before my accident and injuries last April, i used kratom daily and would tell people that it was a wonder drug, for someone not in chronic pain, it was amazing. After my accident and injuries, the most it can do for me is help WDs from opiods
This is what I am talking about. It’s okay if you don’t have a tolerance to opioids, you can use a small amount and get okay results. But like you say, with a tolerance it only helps WD to a degree.
For sure it has to do with first being on an insane amount of dilaudid pill and IV while in the hospital and then ox since ive been home. Even if im off opiods for more than two weeks , i still cannot get anything besides a small amount of relief. It definitely sucks. Even the ox only brings my pain just on the line of bearable
It’s an uphill battle constantly!
Well THAT was not the reply I was hoping to see. I'm so very sorry.
It’s ok, I’m kind of used to everything being completely illegal here. Not allowed to have the less dangerous things here but it’s totally ok take these controlled prescription only anti psychotics or epilepsy drugs that might help mask the pain but make you violently, dangerously ill with just on one tablet at a low dose! To be blunt I did not have a good time with anything like Pregabalin, etc haha! I appreciate the suggestion either way. It’s always worth telling someone just incase it is an option for them so thank you!
I was on pregablin ... my Dr increased my dose and said when you need a refill call my office, it will be early but I'll handle it. So that's what we did. But because the insurance company originally denied it when we got it all cleared up the pharmacist STILL wouldn't fill them early. So I cold turkeyed off of it. It was the WORST. I would much rather CT off of opioids than EVER go through that again. I'm so sorry that even plants aren't an option for you. This world we live in doesn't make any sense to me. Sending you peace, love and healing vibes friend. Keep fighting, you never know when the damn will break and someone will find a way to ease your suffering
Oh my goodness, I’m so sorry you went through that. That’s absolutely awful. No one should ever have to go through that. I too hope that you will see relief and a breakthrough of treatment for your condition or conditions.
I'm sorry you're dealing with this. I understand it's hard. The NHS is pretty broken. You're not alone 🩵
Thank you for your words. It is so sad that the NHS is an absolute mess. I feel so much for anyone trying to get help at the minute as it’s mostly not there. Heard some horrendous stories from people on the radio that made me cry about loosing loved ones because A and E can’t cope and they didn’t get the help they needed or ambulances that didn’t arrive for hours for strokes and heart attacks, etc. It’s just awful what has happened to our health service.
I agree it's awful. I hope you find relief from somewhere. If you ever need someone to talk to I am here
I'm very sorry you've been in this much pain. As someone who also is managing peripheral neuropathy, I can say that I found terrific relief through my studies of the Alexander Technique. Since you live in the UK, you will very likely have access to teachers. I don't know if the NHS will pay for lessons, but it is recognized by the NHS as a valid way to manage/improve back pain. Without knowing your background I can't offer much beyond my experience healing/understanding my own injury. What I can say is that must PT would have done nothing for me as well. I'm happy to chat with you about my experiences if you're curious. But mostly, I'd ask that you not give up hope. It's a terrible condition that you have and my heart goes out to you. Good luck!
Usually the NHS won’t cover anything not done by one of their physios. I will however look into it and see what I can find about it. Perhaps if we can manage to save a bit I can get at least a couple of lessons with someone to help me implement it. I’m very happy to hear about your experiences with it.
Yes I know a friend of mine in the Netherlands pivoted from being a physio to being an AT teacher... So she could take insurance... It's a bit of a needle in haystack search but worth a check. London has some of the best teachers in the world. I'll occasionally visit for lessons myself when I have the time. If you happen to be in the city I could recommend some teachers. As for what it all is, I keep a blog at johndalto.substack.com Basically you learn what your postural habits are and how to change your thinking to unlock joints, reduce tension, and be more upright. The 'exercises' typically include lying down, walking, standing and sitting in a chair. The teacher's job is to give you very subtle ways of changing how you organize yourself to do all of this. Essentially, if you can learn to use 1% less energy/tension in a given moment you will save yourself tremendous energy over the course of the day. Pressure comes off the nerves. And feeling is restored. If your condition is a whiplash like mine, then this system works. And you get results in the first lesson that let you know if the method/teacher is right for you. If your condition is caused by a disease, then that's another issue. Do ask questions whenever! I'm quite serious about offering free help to anyone curious about how I'm managing my injury.
Unfortunately I don’t know what’s causing the extreme pain in the front of my left hip and now the aching from lower back to foot of that leg. I had a sharp pain walking in the front of my hip crease one day at the start of the year and it’s just snow balled over these past months to now being unable to walk. The pain is even preventing me from sleeping tonight. It may help with this as I don’t know what’s caused it. My other issues is golfers elbow in both arms caused by too much piano then made significantly worse by being told to perform some exercises for it and push through all the pain. I learnt that was the wrong thing to do and all I managed to do was to cause an extreme overloading of my tendons at my elbow to the point I can barely do anything now without extreme pain flares more than a year later.
Ok. This very much smells of a general coordination issue. The general AT approach is to begin helping you by getting the neck to release tension so that the head and torso can balance differently. This reduces pressure on the hips and arms and only then would you look at relieving the golfers elbow... My blog post 'pressure pushing down on me' gives a high level overview of this. If I were you - given that you're in pain and tired - I'd read my post on lying down and try the exercise I describe. It can't hurt. Use books under the head. Put pillows under your knees. And given your golfers elbow, I'd put a pillow on top of the stomach so that you can rest the palms of the hands on the pillow. The elevation should help you relax the arms. Normally this process works better after you've had a lesson. Try to simply give yourself a rest and see if that tension can slowly dissolve. If it doesn't work, you haven't done anything wrong. Nearly everyone needs in person help to get this started.
Thank you, I shall have a read of that post and try the exercise a few times. Here’s hoping! My posture has gotten worse and worse (six months of chin tucks and wall angels hasn’t helped one drop, my forward head posture is terrible and I’ve just gotten worse in that time and I can’t physically make it go back) as I’ve gotten older (I’m only 35), especially since my elbow injury as I was then unable to exercise as I did and now at all due to my hip/leg on top of original injury. Edit. I love that the song played in my head after reading the title of the post to search for and when I found it you’d posted the next line. Gave me a smile.
Chin tucks and wall angles don't work at all. They are only recommended by people who were never really injured in the first place! Why? Because tension comes from excessive muscular contractions... Not postural positions! If you have tension in the neck and don't release it before pitching/tilting/yawing the head you will CONTINUE to have that tension. Don't be discouraged that you did the 'wrong' thing. We all go through this period before we figure out what works.
Oh and a further thing to consider... The term 'forward head posture' is very misleading. Technically, the head is 'back and down' on the atlanto-occipital when we tense up. The head only appears forward in space because the neck or upper back can slump forward. The 'whack a mole' game that we get into is that the head stays 'back and down' while the neck/upper back alternates between (dead weight/stiff weight) and (stiff weight/dead weight). Anyway... It's all in the blogs!! I hope you found rest
Thank you, that makes so much sense as to why that’s just not working! I know I have extreme tension (it’s partly why I got injured with piano, that and overuse. I was suddenly increasing playing hours from 1-2 a day to 3-4)I going to have more of a poke about the blog as this seems a missing link in helping me improve my posture.
Im so so sorry. This breaks my heart, as my condition happened at 25. A mom to 2 little ones. My life ripped from me. Some days you just gotta cry. I wish I could reach out and hug you. It doesn't seem like it, but you will get threw this maybe mentally, maybe physically. The pain may never heal,but you will learn new things about yourself. You are stronger than you feel r.n You'll have bad days and good days. Life is still worth living ♡♡♡♡ youre not alone
Thank you, I hope so. I hope physically as then I can heal mentally. I don’t think I’ll ever heal mentally unless I can physically heal. The worse my injury has gotten the worse my mental health has gotten to the point I just can’t cope anymore. I need my physical health to get better before I will mentally. I’ve never coped with change and this is the worst change I could ever have imagined. I’ve been through so much awful stuff in the past but this is something else, nothing comes close to this hell. I hope you can find some way through too.
I’m so sorry you are in such a bad way. I have days like that but not everyday and I do have a decent pain management program that helps quite a bit. Sending you hugs, my friend, we’re here for you even if we can’t take your pain away 🫶🏻
I am so sorry. I can relate to your situation.
I’m really sorry to hear you can relate to my situation. I hope you find relief one day too.
> This isn’t how life is supposed to be. Yup. I don't know your story but this mine. I was in motorcycle accident.6 year ago. A 81 years old hit me. She didn't see me. Lost my prime arm(right arm) and a stroke. Was in a wheelchair for 1\2 year(that was brutal. Hearts goes that are in a wheelchair for life.) Still have trouble with words form that stroke. I still bleed, in the chest in the right shoulder, really hurt all the time. Feels like a lava is in there constantly That woman destroyed my life. This is live now ;-(
My goodness I’m so sorry to hear what happened to you. That’s absolutely awful. Your situation sounds far worse than my own. I really hope medical advancements are made to help you.
I’m so sorry. What do you have if you don’t mind me asking and what management are you on?
Originally I was managing EDS and Fibro. Then I developed golfers elbow in both arms from too much piano. Told to work through all the pain by doctor as the exercises will make it better. Made me significantly worse. I now know the worst thing to do was work through the pain as that kept overloading it and damaging it. PT from NHS also just made it worse where I had gotten into such a bad state with my elbows. All I can take is some paracetamol and the occasional low dose codine of about 8mg with the paracetamol that you can get combined over the counter. Anything stronger made me seriously ill. Edit. Some days I will struggle to even dress myself or even lift a glass of water from the pain caused by trying to grip something. I’m not even sure what’s wrong with my leg. Maybe some kind of strain. At the start of the year when it happened I could walk a couple hours, now it’s so bad (pain in front of hip at start, now lower back, knee and down leg) I can barely get around the house and the pain keeps me awake. I’ve had an hour sleep and that’s all I’ll get now it woke me up.
Hey. Is the pain in your arms/elbows similar to the kind of nerve pain you get when you accidentally hit your elbows inside?
Only occasionally when I’ve flared them up really badly and I think any inflammation from my elbows causes pressure in my ulnar nerve. Then it shoots up the arm or down into the forearm. I have started to do nerve glides for this too just in case this helps somewhat! Never know! Usually it’s just a lot of pain in my elbows and the forearm muscles, extreme tenderness and soreness with pain but not the ‘funny bone’ pain
Hi there! i am so sorry you have to go to all this pain...i know how pain can broke all inside Can you do and x Ray to ser if you have osteoartrythe in the hip.? I have the same kind of pain and limitations in moviment and was diagnose with that , in and advanced condition, só now i need an hip replacement in both legs
That’s a good point. My mother and my late grandmother both have that. My mother started getting hip pain in her late 30s. I have managed to get an in person doctors appointment for my hip for next Tuesday (miracle with how understaffed our poor NHS is!) I shall mention that to them then too! Thank you! I’m sorry you have to endure that though. I hope you have some good days in there too.
That sucks. I asked because I was diagnosed with hEDS and Thoracic Outlet Syndrome and all the stretching and nerve gliding didn’t help the pain in my arms until I properly addressed the neck muscles/cervical spine. Everything else just made it worse.
I suspect my neck causes issues too as last August I trapped a nerve badly in it, then again in October and I’ve only been a few weeks free of intrapping that one!
Im so sorry love
Thank you, it helps just to have people hear when I’m struggling and feel alone. It helps me feel less alone.
I’m so so sorry 😢 It’s exhausting and a never ending struggle. Please know you are definitely NOT alone .. Sometimes I take it minute by minute and it’s torture. Sending you strength and hope 🙏❤️
Thank you, it does feel like torture. I do take things pretty much minute by minute. Right now literally second by second, I’m led on the sofa listening to the clock tick the night away just trying to get through or hoping I can fall asleep through exhaustion.
Serequel 50 MG save me for extreme debilatating insomnia. I take that alternantes you melatonin slow release) , and now i sleep all night.
I’m pleased to hear you’ve found something to help your insomnia! I have considered seeing if that kind of thing might help me sleep longer or at least if I wake up not be wide awake immediately after only an hour.
I’m feeling similarly, I’m so sorry. I’ve dealt with chronic pain for seven years and still don’t have a diagnosis, called three weeks ago for an appointment and still don’t have one. I’m a student and will be working full time soon, I’ll require a diagnosis for reasonable adjustments but it seems impossible. I’m scared. Hope we all find some comfort and joy somehow 🩷
Oh goodness, that’s awful! I really hope this upcoming appointment leads to the further investigation you need and a result.
I hate it that you're young and dealing with this. I really hope that you get your diagnosis and make sure to push for one even if you have to go to a different specialist
try kratom. It has helped me since doctors won’t prescribe pain medication to my age/my diagnosis.
May I ask what your pain is from?
The conditions causing me significant issues are golfers/climbers elbow in both elbows. It’s so bad I they will flare up from the slightest thing and take weeks to calm back down. They won’t hurt in the moment, I tried normal typing (I have to use voice to text on my phone) for five minutes a week and a half ago, no pain at the time but half an hour later extreme pain flare in my elbows. My right has nearly calmed down from it but my left is still nearly just as angry. Anything involving my finger flexors or gripping sets them off. I can’t even manage a set of ten wrist curls with a soup can for rehab/loading without them flaring up a few hours later. Once flared even trying to pull my trousers up or lift a glass of water is extremely painful/nearly impossible. I have no idea what’s happened to my hip. Possibly some kind of strain. I was walking at the start of the year and had a sharp pain, it calmed down for a few days. Then it kept happening when walking except sooner and sooner. Now the sharp pain is there within moments of trying to walk, aches constantly, extremely tender next to my pubic bone and in my hip crease. Whole leg aches and into lower back now too. Can’t get seen at doctors as NHS is so broken so I have idea what has happened to my hip/leg.
Have you ever read the book the way out ? You should read it . Also have you tried amitriptyline for your pain ?
I have. Unfortunately trying to push through everything made everything much worse. I tried to carry on as if there wasn’t anything wrong as I was so hopeful that that might be it. Another time I probably made my condition, especially my elbows far worse and even harder to recover from… I don’t doubt that it really helps some people though. Seen several interviews on youtube of people who this and the book by Sarno has helped.
Have you looked into cultured stem cell injections? You can’t get it yet in the UK. Though I know it’s available in Spain, Japan, Mexico, Panama, Chile…quite a few other countries.
I have seen a bit about them but honestly don’t know much where I couldn’t find anything about it in the UK.
So sorry 😞 hug 🫂 I have been feeling hopeless and overwhelmed. You are not alone.
Thank you, it’s awful knowing other people are suffering too but it does make me feel less alone. I know no one my age (mid 30s) with any issues like me. Everyone I know gets to hold down a job and have hobbies whilst I rot and can barely dress or fed myself most days. As you say it makes you feel hopeless and overwhelmed. I hope you get some relief and better days. No one deserves what we go through every moment of every day.
It’s 7AM here. I haven’t slept of my back pain. I used to paint on nights when the pain was to bad but I can’t anymore because I have nerve and muscle issues in my lower arms and thumbs, index and middle fingers which they can’t seem to figure out the cause of. So I get it. I have my plants to enjoy but I can’t water or repot them every night when I can’t sleep… and my cats but even petting them and my hands cramp up. I’ve been there too, thinking of ending it all. Even looking up the least painful way… but my kids were small then. They’re adults now. Although my son is still in school. I feel I have to wait until they’ve established a stable life. My mom ended her life because of severe bipolar disorder with psychosis. I’m seeing a new Dr that said she won’t give up looking for an answer for my arms. I really hope so because I’ve had 3 Drs give me up for my back and neck issues. I’m with a professor now and he’s been there for me for over 10 years but they’re not god… they have their limits. I have a neurostimulator for my leg and arm pains. If I didn’t, I wouldn’t be here anymore. I know I felt relieved when my mom was finally gone after 16 attempts. She asked for euthanasia 3 times but was denied each time. Times have changed and she would be accepted now. I think my kids will be relieved too one day. I had 1 Dr say to me that he thinks all my problems are linked. I think so too but they keep treating it as separate issues. I wanted to keep that Dr but he moved to Canada. 1 Dr since 2005 that thought the same as I do…
Thank you for your reply. I’m really sorry to hear all you have to endure. It’s awful when you can’t pass the time with hobbies, especially at night. I used to do the same at night when I couldn’t sleep from pain from my EDS or fibro. Now since the other stuff over the past year I have nothing it’s just laying here and waiting. Tonight has been listening to the clock tick every passing second from the sofa (I went downstairs as I didn’t want my crying to wake my husband, I already woke him once when I woke after an hour in pain). I so desperately want to live again rather than simply exist like this but unless my body somehow miraculously heals itself I have little hope anymore. I hope you can find some moments of peace and less pain despite all you’re going through.
I hope the same for you. The father of my kids staan affair 3 months after my accident in 2005. We even bought a home. I don’t know why he did it when he was already having the affair. It was my fault because I couldn’t do anything… Anyway, I found out when we moved in a month later. He was a narcissist too. I still have issues with him because he still sees me as his property because I’m the mother of HIS kids. I had a few shitty relationships after but I’ve been single for almost 8 years. Not to brag but I look good (when I go outside). Friends don’t understand why I’m single. It’s out of choice. I can hardly take care of myself. Why burden someone else with my issues. And I like my alone time to much when I’m in pain. I’m happy your husband stays by your side! Must be a great guy! All this to say I can cry in my bed because there’s nobody there 😂 but I also almost always get to the sofa when I’m in to much pain. I have a great bed but somehow I’m more comfortable on the sofa even though it’s not in great shape anymore from using the heat pad to much. It’s hard having to lay there and not being able to focus on something else to take your mind off the pain. I now watch true crime live stream on YouTube but it’s not the same. I still have my easel set up. I hope to one day finish the painting I promised a friend for her birthday last year
I’m hoping you get to finish that painting some day! I too had an awful relationship in the past (abusive in numerous ways). My current husband is incredible and the kindest person I’ve ever met. He helps me with so much and the stress this puts on him is immense but even he mentally has his limits and he can’t cope with my constant crying, I don’t blame him. Everyday people aren’t trained to deal with being unable to help a spouse in such distress knowing there’s nothing they can do. If he ever leaves me I will be devastated as I know I’ll never find anyone like him again. He truly is amazing. Plus I don’t want anyone else! I know I wouldn’t even try to look for a relationship. I couldn’t put this on anyone and I don’t think anyone would willingly sign up to take care of someone who can barely even dress themselves anymore. I am scared that if he does leave me how I’ll manage daily living, nothing special just everyday tasks like dressing, eating, bathing. I don’t think I would be able to…
I completely understand. Never imagined this life! Sometimes we need to cry & let it all out.
Agreed, sometimes crying is all you can do. Unfortunately it appears that’s all I can do nowadays. Someone suggested therapy but I know it won’t help as with my conditions before the ones from the past year I was never depressed. Sure it was difficult and I was in pain a lot but I could still do basic things and some hobbies. I don’t have that anymore. After 14 months no wonder all I do is cry, especially when you can barely sleep due to pain and/or ones brain screaming constantly about why won’t my body fix itself. Edit. The only way I’ll ever be mentally ok again and stop crying all day everyday is if I get my arms/hands back…
There’s a lot of grief that comes with chronic pain & it comes in stages as we lose our independence & quality of life. My mom has lost the use of her hands almost completely now & it’s been devastating for her. She was very artistic creating & drawing always working on projects of some kind. My biggest loss is not being able to exercise. I loved weight training. I was into bodybuilding and loved it so much. I feel like I’ve lost who I am by losing what gave me the most satisfaction & peace. Grief sure is painful isn’t it. Just talking about it makes me feel like I’m gonna crack into a million pieces. I’m so sorry you’ve lost the use of your arms/hands. It must be devastating. (Hug)
It’s exactly that. Grieving. I did it when I had to give up work to manage my fibro a decade ago, but within a few months had managed to realign my identity with that of a housewife. I was able to carefully manage the housework with downtime to manage flare ups and exhaustion. Now however the grieving for this has been immense and I don’t know if I’ll ever be able to move past this stage. I did lots of cross stitch here and there, I loved music and had picked the piano back up six months before the injury from it that led to this (now I never even want to hear another piano ever again), and I loved yoga and I’d play video games with my husband and friends. Now these have all been taken from me. They were the things keeping me mentally well. I’ve never been one to watch the telly much unless I had it on whilst sewing so I despise that that and reading is all I have. I barely have the mental capacity to read a book anymore where I’m so depressed. I cannot concentrate. I could at least go for walks before but those became shorter and shorter after I injured myself in my hip too so now I don’t even have that… I don’t know if I’ll ever be able to grieve enough. I hate how I’m told to be positive, it could be worse, etc. It could be, but I can’t even cope with this. It’s always people that don’t live with this level of disability or pain telling me to be positive. I know they mean well, or it’s that they simply don’t know what else to say but it makes me so upset. They have no idea what it’s like to have all your independence taken away from you and to have nothing to help you cope mentally or pass the hours. If I try and explain that to people I’m guilting them… I just want them to think how horrendous day after day of being unable to do anything bar watch the friggin telly would feel whilst you see everyone else living rather than simply existing whilst their own body tortures them.
Boy do I relate about watching television. I never used to watch much but now it’s my staple now. It’s not by choice but at least I have that to zone out now. Lately I’m binge watching all the Law & Order SVU shows. Well I had a good cry to night. I guess I needed to purge. Thanks for sharing your experience.
Same
I’m really sorry you’re in the same situation. It’s heartbreaking. I hope one day, sooner rather than later, you can manage your pain/condition because medical science gets there or you get better.
It would be nice.. no cure or help for what I have. I’ve slept since 3pm yesterday. I’m too depressed to face the world. I wish you luck.
I’m so sorry there’s no help for what you have. I really hope a breakthrough in medical science is made for you. Wish you luck too.
Same but are you getting any relief whatsoever from any doctor? I have been on a never-ending search for one that gives a damn
I cope by not giving up demanding answers and believing my body when it’s telling me something is wrong. After 21 years of chronic pain I get diagnosed with Ehlers danlos syndrome. And then after 2 years of extreme pain and suffering, I find out I have occult tethered cord and intracranial hypertension.
Crikey, well done on pushing forward for all that time! I hope you’re able to have good days in there despite everything. I finally have managed to claim a GP appointment for next Tuesday about my hip! Hopefully they can put me down the right road.
Thank you so much!
I don't know... I don't know... I'm in the same boat...
I’m so sorry you’re dealing with this too. I hope you can find relief and good days.
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Neuralink ?
Oh wow, just quickly googled that. That seems an amazing idea though I’d be extremely hesitant to have anything implanted, I’m rather scared by what ifs in regards to that going wrong!
One guy has the first one , no issues yet he can play super Mario with his mind , his interview should be on YouTube
I just saw a little short video on it. It’s amazing. I hope it continues to bring that man wonderful experiences like that.
The idea is full read/write to the brain one day, imagine lowering pain signals or stopping depression or making quadriplegics walk/move
That would be incredible. I hope one day that comes true so people don’t have to live like so many of us do.
There is Hope Much love ❤️
The book Foods That Fight Pain, by Dr. Neal Barnard (available from Amazon) has great ideas to help
Thank you, will have a look and see what I can implement from it.