Chronic pain folks

[TapToBoreMeRigid]

I have what I think is TMJ/TMD. It's been getting worse for six months and now I can barely eat. I'm waiting for my GP to get back to me because I can't wait til my next rheumatology app to talk about it.

I feel like I moan all the time but I also feel like I don't moan every single time I'm in agony.

 

[Thatscool]

I swear pain rules my mind and my life, I'm constantly thinking about it. Sometimes I just want to scream and rant, if you need someone to talk to or "moan" to I'm here

Can I ask how often you see a rheumatologist if you don't mind?

 

[sleepisforwimps]

Thanks so much, sending back love and support too

I don't actually know what I have but its coming up on 6 years since I had a pain free day.
I'm on duloxetine for nerve pain, literally my whole body hurts and any pressure like if I bump into something it feels like a deep stab. Also have joint pain in fingers, wrists, hips and knees.

Do you have a diagnosis already? X

I swear pain rules my mind and my life, I'm constantly thinking about it. Sometimes I just want to scream and rant, if you need someone to talk to or "moan" to I'm here

Can I ask how often you see a rheumatologist if you don't mind?

Every 6 months is usual for me but since the pandemic it's been telephone appointments.

 

[TapToBoreMeRigid]

I had my initial rheumatology appointment at the beginning of February after my GP finally referred me just before Christmas. Lots of x-rays, blood and urine tests on that day. Spinal MRI coming up on Saturday morning. After that I expect an appointment within 6 weeks to talk about all of the results and hopefully get a diagnosis of some sort. Life has been so grim.

My GP just prescribed me some Naproxen and increased my amitriptyline because my jaw will barely open or close. I was waiting for her call while desperate for the toilet haha. Unbelievably my GP is still yet to receive details of my rheumatology appointment so I had to contact them to have them send an interim letter with permission to increase amitriptyline. One hand doesn't know what the other is doing!

Sending my best to all of you. You're all incredibly strong. I had no idea the body could withstand this amount of constant pain. Unreal.

 

[sleepisforwimps]

I swear pain rules my mind and my life, I'm constantly thinking about it. Sometimes I just want to scream and rant, if you need someone to talk to or "moan" to I'm here

Can I ask how often you see a rheumatologist if you don't mind?

I had my initial rheumatology appointment at the beginning of February after my GP finally referred me just before Christmas. Lots of x-rays, blood and urine tests on that day. Spinal MRI coming up on Saturday morning. After that I expect an appointment within 6 weeks to talk about all of the results and hopefully get a diagnosis of some sort. Life has been so grim.

My GP just prescribed me some Naproxen and increased my amitriptyline because my jaw will barely open or close. I was waiting for her call while desperate for the toilet haha. Unbelievably my GP is still yet to receive details of my rheumatology appointment so I had to contact them to have them send an interim letter with permission to increase amitriptyline. One hand doesn't know what the other is doing!

Sending my best to all of you. You're all incredibly strong. I had no idea the body could withstand this amount of constant pain. Unreal.

That sounds really hard tbh. I hope that the test results shed light on the situation and that the Naproxen helps

 

[patsy_stone]

Hoping to revive this thread

Chronic pain for 10 years with a bulging disc in my back. Was told it was not bad enough for any treatment except for "pain management" which was basically roundabout way of telling me to put up with it. Diagnosed with fibromyalgia earlier this year, had a severe flare up last month followed by near constant back spasms. Chronic sinusitis, I've a deviated septum and had sinus issues all my life. Got COVID in October, now getting severe sinusitis every few weeks. Carpal Tunnel Syndrome in both wrists, was awaiting a referral to the hand clinic to be told by the rheumatologist it never went through. Currently on Cocodamol, Duloxetine, Baclofen and Fenofexadine, plus frequent antibiotics and steroids. Chronic illness/pain is so isolating, this thread made me feel not quite so alone.

 

[sleepisforwimps]

Hoping to revive this thread

Chronic pain for 10 years with a bulging disc in my back. Was told it was not bad enough for any treatment except for "pain management" which was basically roundabout way of telling me to put up with it. Diagnosed with fibromyalgia earlier this year, had a severe flare up last month followed by near constant back spasms. Chronic sinusitis, I've a deviated septum and had sinus issues all my life. Got COVID in October, now getting severe sinusitis every few weeks. Carpal Tunnel Syndrome in both wrists, was awaiting a referral to the hand clinic to be told by the rheumatologist it never went through. Currently on Cocodamol, Duloxetine, Baclofen and Fenofexadine, plus frequent antibiotics and steroids. Chronic illness/pain is so isolating, this thread made me feel not quite so alone.

Oh that sounds utterly vile it's an awful lot for one person to cope with xx

 

[patsy_stone]

Oh that sounds utterly vile it's an awful lot for one person to cope with xx

It is vile. I've got an ENT appointment next week, hopefully they can do something about the sinusitis. Not having to deal with that every few weeks would be nice! Fingers crossed xx

 

[sleepisforwimps]

It is vile. I've got an ENT appointment next week, hopefully they can do something about the sinusitis. Not having to deal with that every few weeks would be nice! Fingers crossed xx

It sounds bloody awful to deal with to be honest. I hope that ENT are able to help. Has your GP been supportive?

 

[patsy_stone]

It sounds bloody awful to deal with to be honest. I hope that ENT are able to help. Has your GP been supportive?

In a word, no. There is one nurse practitioner there who does a really good job and I wish I could speak to her every time, but you can't choose who to speak to. Different person every time. And never an actual GP. When the back spasms started I spoke to someone who just boasted of working at Stoke Mandeville hospital and being a former ambulance tech. His complete lack of empathy made me cry. Normally I wouldn't cry, that's not me at all, but I was in so much bloody pain.

 

[sleepisforwimps]

In a word, no. There is one nurse practitioner there who does a really good job and I wish I could speak to her every time, but you can't choose who to speak to. Different person every time. And never an actual GP. When the back spasms started I spoke to someone who just boasted of working at Stoke Mandeville hospital and being a former ambulance tech. His complete lack of empathy made me cry. Normally I wouldn't cry, that's not me at all, but I was in so much bloody pain.

I'm so sorry to hear that they've not been great. It's incredible how people can lack empathy when it comes to pain. Sending you a massive hug

 

[patsy_stone]

I'm so sorry to hear that they've not been great. It's incredible how people can lack empathy when it comes to pain. Sending you a massive hug

Thank you Empathy and being listened to goes a long long way.

 

[TapToBoreMeRigid]

Sending a gentle loving hug to all of you struggling with pain.

6 months after my initial rheumatology app which led to scans etc, I've got a date for a follow-up. I just want answers. I fear, that like many of you, my life will continue to revolve around pain management rather than anything bordering on a solution.

 

[JillZarin]

Reading through these posts is heartbreaking. So much chronic pain around. My step-mum has RA, diagnosed about 8 years ago. On methotrexate and benipali as well as a cocktail of other meds. Benipali has stopped working and has now been prescribed orencia, she can't take it for two weeks to allow all the Benipali to leave her system, she is taking steroids but they're not touching it and is confined to bed the last couple of weeks, and will be. Its just awful

 

[patsy_stone]

Sending a gentle loving hug to all of you struggling with pain.

6 months after my initial rheumatology app which led to scans etc, I've got a date for a follow-up. I just want answers. I fear, that like many of you, my life will continue to revolve around pain management rather than anything bordering on a solution.

Exactly this. All the healthcare professionals I have seen (except the nurse practitioner I mentioned previously) offer absolutely no solutions. And if I hear "self refer to physio" one more time I might scream. That's where all of my hopes for a solution went to die.

 

[Bob's Aunt]

I'm currently bedbound with a huge fibro flare. I'm feeling shocking, really really unwell at the moment. Constantly nauseous, pain levels are extreme, fatigue is extreme, insomnia is extreme, despite enough pain killing opioid to bring down an elephant (no comments about me being a pudding, it's baby weight ............... he is only14 !!!). I had covid bad enough to be ventilated on Jan 2021. I've been really unwell since, very very unwell. I've next to no mobility left. I've got thyroid issues, suffered multi organ sepsis that nearly finished me, a spontaneous SAH, diabetic, neuropathic issues and carpal tunnel. My body is a total mess and I seem to be in tears more often than not right now. It's horrible and I don't want to play any more xx

 

[Tea and Toast]

RA girl here.
I was diagnosed at 24, I'm 53 next month so have had it almost 30 years now . .
Ive been on bioligics for a year now, along with methotrexate and naproxen and a dose of steroids when necessary. Ive recently stopped tolerating naproxen so thats been stopped and during an emergency face to face with rheumatologist today, she decided Ive not responded well to the biologics so has increased the methotrexate and is starting me on another biologic. .

Anyone else experienced the shoddy service of the company who delivers the biologics to home? Its SOOO stressful arranging it all.

She's referred me for injections into my shoulders too ..
Im sick of all this pain . .my sleep is affected as every move I make, wakes me up. I dread waking up most days and facing another day of this tit.

Sending gentle hugs to anyone who needs it

 

[patsy_stone]

I'm currently bedbound with a huge fibro flare. I'm feeling shocking, really really unwell at the moment. Constantly nauseous, pain levels are extreme, fatigue is extreme, insomnia is extreme, despite enough pain killing opioid to bring down an elephant (no comments about me being a pudding, it's baby weight ............... he is only14 !!!). I had covid bad enough to be ventilated on Jan 2021. I've been really unwell since, very very unwell. I've next to no mobility left. I've got thyroid issues, suffered multi organ sepsis that nearly finished me, a spontaneous SAH, diabetic, neuropathic issues and carpal tunnel. My body is a total mess and I seem to be in tears more often than not right now. It's horrible and I don't want to play any more xx

Sending you a very gentle hug.

RA girl here.
I was diagnosed at 24, I'm 53 next month so have had it almost 30 years now . .
Ive been on bioligics for a year now, along with methotrexate and naproxen and a dose of steroids when necessary. Ive recently stopped tolerating naproxen so thats been stopped and during an emergency face to face with rheumatologist today, she decided Ive not responded well to the biologics so has increased the methotrexate and is starting me on another biologic. .

Anyone else experienced the shoddy service of the company who delivers the biologics to home? Its SOOO stressful arranging it all.

She's referred me for injections into my shoulders too ..
Im sick of all this pain . .my sleep is affected as every move I make, wakes me up. I dread waking up most days and facing another day of this tit.

Sending gentle hugs to anyone who needs it

I've had naproxen attempted to be forced on me many times. Never been able to tolerate it, or any NSAID's for that matter. I take an extra strength ibuprofen once in a blue moon when my muscles will not respond to anything else but the acid reflux after is something else...

What is it with delivery companies? Especially ones who deliver important medication/equipment. You are in enough pain without it being made worse by the stress of arranging deliveries with a crap courier.

I hear you with the dreading waking up. I work 5 days a week, up at 4am every day and I genuinely don't know how I do it. And I get precisely no sympathy at work, I'm fairly sure they think I'm making it up. But I rarely have a day off, so that's probably why. I've had two days off in a year and now I've hit the "trigger point" so I'm afraid to take any more days off.

 

[FranklyFrankie]

Hi, I don’t have chronic pain but looking for advice. My friend has chronic pain. He is on a lot of different pain relief for it. But he takes over what is prescribed a lot of the time for example taking 5 times over on one medication, three times of another (known to take 4 times as well). I’m not with him everyday so not sure if it’s a daily thing but I’d say every time I am he takes extra. The pharmacy also gave him quite a lot of extra medication twice by accident without knowing and he still used all this medication before the new medications were due. this medication he admitted to another friend he is addicted to in the past. I find him hard to be around the majority of the time as often he is in a bad mood, argumentative and complains most of the time. I feel his mood changes easily. I also feel I’m walking on egg shells trying not to annoy him or say something where he’ll argue with me about it. I think this could be a sign of addiction? But not sure if it’s just due to the pain? Not sure what I can do about it anyway.

We usually do everything together but I also want to do things that he would not be able to do due to his condition and the things he wants to do a lot of the time I don’t enjoy as I want to be doing other things. I feel bad and just go along with what he wants most of the time. He makes me feel bad if I do something alone and I even invite him sometimes, he doesn’t come then gets annoyed at me for doing it. Would you be mad if I just booked it? Should I just book and do what I want? I know it sounds bad but I think I’d enjoy it more alone anyway.

 

[Thatscool]

I know for me Fibro had taken the fun out of days out or planning activities with my friends and family. I was always on edge waiting for a flare and stopped doing things I loved out of the fear. I spoke with a counsellor earlier this year and it really has helped me, I spent so much time worried about "what if" instead of thinking ok I might need a few days to recover but I can plan for this now, or I might be ok, but I'll still prepare to be nicer to myself anyway.

Chronic illness can be very lonely, you can be in a room full of people but still feel alone, its also often dismissed as an "invisible illness" for some. I think your friend would benefit from speaking to a doctor or counsellor, pain medication addiction is real and they could be feeling shame about this so are very defensive about it. If they are not getting out much as well the medication will be almost like their hobby and the day will revolve around it since they have nothing else to keep their mind stimulated.

Your friend needs help, is there a family member of theirs you could talk to? Unfortunately for you its those that try help that end up in the firing line, you want to help your friend but you also need to look after yourself and you are more than entitled to do that, hopefully your friend might understand that.