Pain Management Psychology

[natherly]

I have ITBS and GTPS in my left leg, I also have a diagnosis of primary chronic widespread pain.

I have not received any treatment for my leg problems - not even targeted physiotherapy, despite being diagnosed a year ago.

My pain consultant is obsessed with proving to me that no procedures will help my pain - he even sent me to orthopedics who x-rayed my leg, even though x-rays don't show soft tissue problems.

He is also adamant I go on a pain managagenet course. I dont want to because

1. I have read countless self help workbooks and resuorces and they contain very little advice that works for me and I find them extremely patronising

2. I will struggle to get the time off work and a lot of the time will be spent on topics that have no value for me (my self esteem is great, I dont struggle to get to sleep, I already pace, and exercise motivation is pointless because it causes pain flares that last days - and I have to sit and work in that pain)

3. I am worried that accepting the pain management course will be taken as a sign that I have accepted they are not going to try and treat my ITBS and GTPS.

Point 3 is the biggest issue. I can not accept that I should put up with pain, wrecked sleep and increasing disability from a treatable problem.

I feel like all the pain consultant sees is a widespread pain diagnosis - other doctors as well - any pain I have is being blamed on that diagnosis.

Can anyone offer any advice at all please?

[Petrina_gmfc]

Hi I was on a pain management course and it helped me as you think that your just on your own but your are not there are people who go there who might have the same problem seem as you and you can talk to people I found it really helpful .

[Moreorless]

I too did a pain management course and found it helpful. I already knew a lot of the strategies from reading. I have control over my response to persistent pain which is very difficult to manage.

[Africa14]

Yes Pain consultants do like to put pain down to a diagnosed issue but you have to fight your corner and stand firm.

You might be able to self refer for physio, I know that in our area we are able to. Also check to see if your GP surgery has a physio attached to them who you can ask for an appointment with. Otherwise push your GP for a physio appointment.

Regards

[cyberbarn]

Definitely go for physio. Can you self refer in your area? If not go to the GP. My GP actually had ITBS himself and talks to patients about the physio he did. If you can't get hold of an NHS physio (there are new hubs now that have physios that work with GP surgeries as well as traditional hospital physios) then try a private one.

As for pain management, they do have a tendency to work with people who are distressed by their pain rather than people that have fixable physical causes where the pain will go once healed. And I know they say that pain that is there for more than 6 months is chronic because everything should have healed by then, but soft tissues and nerves take much longer than that to heal. And tendons fall into that category.

My son has a physical cause of pain (ACNEs, abdominal cutaneous nerve entrapment) and has had it for nearly three years. He recently had an assessment with the pain self-management team. He started by saying it might have been helpful 2 years ago, so let me tell you my story... and he spent the next 45minutes basically doing a stand up comedy routine about being pushed around the system. My favourite joke he told was when he said, 'Oh s**t. Pardon my French. I should have said merde.' They two ladies cracked up laughing! Then he finished with so as you can see, this might have been useful two years ago, but I have loads of coping strategies now.

I think you are like my son, you have those coping strategies already, what is missing is the addressing of the physical causes of the pain.

So either self refer to physio or go through your GP surgery and see if there is a physio there. Tell them you know all about chronic pain, but this is different. And if they still won't give you a physio appointment with someone with the right skills, talk to PALS and explain it to them.

[MSTKing]

I think sometimes a letter helps rather than speaking to your GP. If you wrote what you said here in a letter and asked someone to drop it off to your surgery it might help them understand the issues as a whole, better.

It has worked for me in the past - so just an idea. Good luck

[Konagirl60]

You aren’t being heard. The issues have with your knee and hip ARE painful. I’m glad you can sleep.

It seems your mobility is affected. Can you walk at length. Can you sit comfortably? These movements likely increase inflammation.

What medications have you been prescribed? You deserve some pain control. I disagree that people with soft tissue injuries or nerve pain should have to suck it up and live with the pain. That is inhumane!

I to attended a chronic pain management course and it was useless. It didn’t teach me anything that I didn’t already know.

I think you should get another opinion and go private if you can.

[Crystallmatters]

Wow Wow, I am so sorry what a nightmare, Yes a living nightmare that's how for me with while not the same as you there are some similar symptom's.

Yes you can not see through the red in your eyes and the body on fire not just with pain beating it from everywhere with the volume being turning up and down but moving, multiple real pain. Pain in the body, the leg and the Brain and a system totally under resourced.

A nightmare beyond a nightmare. No one seems to listen or understand.

That's a little how it felt for me for years and still life is a struggle.

The hardest thing to do when you are in pain suffering and have massive fatigue is a lot of what they ask write it down, keep a log. Um difficult the truth is you have to fine a small way maybe pre drawn up , even just using colours through parts of the day Green not to bad Yellow increasing and Red bad sounds crazy anything to help work also the system.

Its is so frustrating, but there has to be at some point a realization that first Pain is real and yes it is in your head.

How good are books you read how good is the information on line, do we really understand it in the context of what is going on in our body and brain ?.

In the medical industry it is very hard to get a musculoskeletal expert who will link the area / point of injury / problem with the effects this has on the other parts of the body and pain.

No always is the area hurting bad the back of my Knee joint killing me and the foot and toes hurting and twitching where the route problem is, it can be very painful disabling agony Pain stabbing, yet it is not the knee that is injured, the pain can be radiating down from L4 L5 S1 piriformis muscle issues Piriformis Syndrome. It can be a mixture of issues compounding more pain and hurt into area's.

I tell you this only from my own experience of years of suffering multiple failed lower back surgeries , incorrect surgery leaving a pincle screw in the wrong part of my back for three years not being believed, until a nuclear spec scan showed it up , developing FND pain all over

and then what a surprise through a sometimes broken NHS system and a doctor who does not have time to see you , I have a few struggles with mental health related to pain.

The good News I am on a road of correct pain management , understanding from a medical team that watch and listen and now working with me to make life more bearable .

I have a Abbot stimulator implant under my rib cage and wired into a paddle at T3 / T4 that runs day and night the help break the pain signals with Lidocaine plasters I use on my lower back, plus Gabapentin and diclofenac the correct dosage for me at the right times of day, I am able to pace and work a little again. No No I an not pain free not at all and when a flare up happens I am down, The difference with some understanding.

The turning point after years and years of Hospital incorrect diagnoses, being told I don't know how my body feels, Um you know it.

Life could not be harder living on this planet with having pain or disability, no both.

A lot changed when I when on a Three week two mornings a week pain management course called optimise at oxford a team of physio , Specialist's in Chronic pain and acute , FND specialist, a team of people who listened watched and while teaching us lots about my condition, how to understand the basics . To confirm Pain is real, Understand a lot, give me tools to work with, guide me to the right professional experts for my condition, teach me to pace myself, stop and recognise what is going on in my body Breathe, have compassion first for me and others, well that's a massive word I still struggle with it, at least I understand the meaning when it comes to pain.

It ticked a box in the medical world, Yes to them the fact I bothered I turned up and attended a course meant Um maybe this person really is suffering. I guess the point for me is that by being on this course , the medial team met me in person Listened examined me read my notes and at the end , I was not left in the cold all over, no today they are still helping me and guiding me to live with Pain, Pain is not just a word, to me it means hundreds of things, It had completely my life and those around me, it is worse than the devil, however , I now don't stop learning, One thing, I understand a lot more information that is more inline with what is going on with my body and mine, It just a lot to handle when you are in a flare up or pain has got you down.

Do people really understand me / us / you, Yes the persons that are on this forums , platforms.

I am so sorry I cannot help you, I hope a few words I have written make sense as I am not a good writer with bad spelling. Loads Love David