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Yes 3 different ENT, also gastroenterologist, neurologist and now specialist in pain management. I’ve had MRI, untrasound, camera checking my throat and Larynx ect.

They have tried Botox and local anesthetic injections, I’ve been on Lyrica, gabapendin, anti depresents over 18 months. 

The pain is  like the feeling you get when you are getting a bad cold which normally only last 2-3 days. Mine came on and hasn’t left unfortunately.

Keeping fit staying positive and distracted seems to be my only reprieve.

It’s annoying and frustrating I can’t seem to see a resolution yet. 

Matt

Hi, I am 55 years old and have complex pain. Rheumatoid arthritis, Sjogren's syndrome, seronegative spondyloarthritis, and cervical spine radiculopathy. In March 2019, I developed polyneuropathy that has now expanded to cold allodynia, light sensitivity, and insane pain from what were once beautiful sensations, like a light breeze. Until about 3 months ago this was relatively ignored by the varying specialists and GP's I see/seen, despite the pain being so intense it makes me want to throw up and question my ability to live with this long term, has stopped my stomach and bowel working and caused swallowing problems. I have become very isolated due to the effect of temperature and air flow. About 3 months ago, a neuroimmunologist mentioned the pain clinic and asked why I hadn't tried Duloxetine - have tried other things in the past for medication induced neuropathy in my feet (I tried Duloxetine and ended up in the ED with serotonin syndrome - they thought (the ED) I was neurotic, NOPE - seems to be common for women experiencing pain and other complex health problems). I had to ask my GP for a referral - thankfully this was accepted, and I was contacted 2 weeks later to start the assessment. I have since started on opioids and continue with the benzos and steroids - the pain clinic is still working on a plan of action (I am hopeful despite being told how difficult it is to manage this type of pain and not to expect too much). Sorry if this is too much info - I have been researching the past 2 weeks and have found how poorly this has been managed, including the never considered by me gender bias. I am trying to complete a Masters in Public Health and would like to help others even if it is providing techniques to help manage life.

Hi Noel,

just a suggestion how about going to hospital as this doesn’t sound too good mate at least they may be able to give you something to help 

johnno

Hi Noel, that sounds serious - there is a 13 Health number 13 43 25 here in QLD that can advise you on what to do e.g. present to the ED. Not sure what state you are in or if you have something similar (even call that one).

Carlene

I'm Scott. I had a serious bout of campolyer bacter that 1993 that the doctor didn't take seriously.  Since then I have had bbouts of 1 week to 3 months of sever stomach pain.  I've seen3 gastros and they say I'm fin. I had a gastric sleeve and he said it's fine.

The coplication. I got back pain 6 years after my campolyobacter and was loaded up with painkillers and got addicted. I admitted it thinking the doctor would wean me so he sent me to a methadone clinic (talk about embarassing). I finally decided f-this - saved my take home and did a rapid taper. 60-10mg in 3 weeks and I'm ok.

Now I have the pain back and the stigma.  What do I do.  I've been  looking for help  but its all scams. Nobody will listen to me when they see addiction (the doctor did it to me).

What do I do.  Are there caring pain Doctors in Canberra 

Hi Scott,

sorry but I’ve adjusted your post a little bit , has your capolyerbacter cleared or do you still have occurrences if you do would it be worth talking to your Gp for a referral to a bottomoscopy and throatoscopy specialist they may find the problem if you’ve already been down this road before .

Back pain can be debilitating I suffer lumbar spondylosis from L1 to L5 inc SI joints I have dermal neuropathy done every six months it gives me some relief I also see a physio twice a week and I’ve started exercise physiology once a week .

There is a lot of help out there hopefully we will have a helper in Canberra who could contact you via private messenger to offer some if you are seriously struggling see your GP and have a long chat .

or contact lifeline on 131114

or Beyond blue 1300224636 

please keep in touch 

johnno

Hi. Not too long ago, I started thinking about the nature of pain. I experience muscle pain during my workouts. And I'd say I've learned to deal with it. But I'd like to learn more about it, so here I am 🙂 I hope I don't seem too boring to you!

Hi Shawn,

without knowing a thing about exercise (it’s a bad word in my house) as doing normal household things like emptying the dishwasher , cleaning the bathroom, etc I suffer so I have to pace myself sometimes I fail that  too.

You could also check your vitamin , salt and water levels.

Do you exercise at a gym if you do you could discuss the muscle pain with one of their personal trainers  if they don’t know have a chat to your GP .

sorry if this doesn’t solve your dilemma, 

johnno

Hi Carlene and John.  I am on Duloxetine 30mg twice a day morning and night. Now I can't stop taking it. It was first cab off the rank when I mentioned it to my past GP, maybe it will work he said. Well who knows, my brain seems to think every time someone suggests a new medication, that it may work.

As for hospitals I know them very well, the Ambulance keep taking me to them when things get out of hand. Like when a blood vessel popped in my Larynx from coughing while eating (normal for me nowadays). I was drowning in my own blood, so the big hospital was called for, John Hunter, they have all specialties on call 24hrs. We are nearly country NSW north of Maitland NSW on acres. So Maitland hospital brand new, is my local, but John Hunter in Newcastle is the main one for general disasters and as a fall back The Mater also Newcastle for other stuff. I am on a first name basis with many of the Nursing staff as I have given them a beating over the past few years. It takes a strong nurse to lift my extensive file.

I am back to my GP tomorrow for a read out on my Stress ECG and I have my Echo Cardiogram on Friday. Hopefully something shows why I have this very odd feeling in my legs as after reducing the Lyrica back to original levels the Leg problem has not resolved. But I will keep everyone informed with some results.

As for the pain the neurologists have assessed my need and have given me an appointment for August next year, dependant on life expectancy of course. 

Carlene keep up the good fight, someone must know something that can help you.

Cheers  

Hi Carlene,

have you considered a brain and spine specialist I was having a lot of issues with nerve pain and I was diagnosed with idiopathic peripheral nueropothy this is something they can help you with 

johnno

Gday Noel,

mate you sound like you have the hospitals on the hop and they at least know what to expect now ,do you have private health insurance as that may be a quicker way to get things going .

johnno

Posted by: Johnno

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Hi Shawn,

without knowing a thing about exercise (it’s a bad word in my house) as doing normal household things like emptying the dishwasher , cleaning the bathroom, etc I suffer so I have to pace myself sometimes I fail that  too.

You could also check your vitamin , salt and water levels.

Do you exercise at a gym if you do you could discuss the muscle pain with one of their personal trainers  if they don’t know have a chat to your GP .

sorry if this doesn’t solve your dilemma, 

johnno

Thank you. It's more like muscle repression. No, I don't work out at the gym. But I've heard that to stop my muscles from hurting, I have to exercise even more. Remember to give them a rest, too.

Hi Shawn,

I think your best bet is your GP or a physio as we aren’t qualified to diagnose but we can suggest who to approach without naming names .

cheers 

Johnno 

Posted by: Johnno

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Hi Shawn,

I think your best bet is your GP or a physio as we aren’t qualified to diagnose but we can suggest who to approach without naming names .

cheers 

Johnno 

No, thank you. It looks like physiological pain. I don't think I need a physical therapist. Thank you for your concern.

Hi Shawn,

a good psychologist maybe