Trying to cope with chronic pain: In 2019 I... - Pain Concern

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Trying to cope with chronic pain

TrinityMoon profile image
8 Replies

In 2019 I was diagnosed with a cancerous tumour on my tongue and later in my jaw after treatment which was successful I was cancer free and on track to get back to a normal life. I have had chronic pain since I took a fall 3 months after the last surgery ( Nov 2019). Eventually I was referred to the pain management clinic and was told how lucky I was to be treated by them. Since being with them my quality of life has lessened and pain increased, the clinic seem more interested in getting me off the medications I'm on but not replacing it with anything else. I'm currently on Oxycodone, Gabapentin and Amitriptyline. I finally got an actual face to face appointment. I told him that his new medication regime was still not working, he asked me what would I like to do,. Why is a pain specialist asking me? I don't have a medical degree, I have no idea what options there are, hence me googling long term pain management 4am in the morning!! I am at an all time low, I don't understand why I am on reduced meds when still in pain. Is or has anyone else experienced this? Any advice? I spoke to my Macmillan nurse earlier today but not sure if she can help as in the past the clinic haven't responded well to requests to look further into this.

8 Replies
Bullockj profile image

Hello, so sorry to hear that you are suffering chronic pain. I know how frustrated you must be as I’ve had chronic pain for the last 5 years. Initially the pain management team were great so helpful. They gave me injections of anaesthetic and cortisone in my lower spine which worked wonderfully for 3 months. I’ve had 1 emergency op on cervical spine which I have a cage fitted vertebrae fused together and decompression of spinal cord left scarring on spinal cord. When I had the 2nd lot of injections it only worked for a week which was devastating to me. After this they said I needed to come off of my meds but my consultant over ruled this as my pain is still bad and without meds I am housebound. I found my Gp much more helpful. You can choose to let gp sort pain medication. I know they are trying to help (pain clinic) but telling people they are imagining their pain is not a good way of going about things. Sorry for long reply. Hope you get some relief soon. X

TrinityMoon profile image
TrinityMoon in reply to Bullockj

Hi Bullockj,

Thanks for your reply,

I'm waiting to see the physio who apparently do more than rehabilitation exercises, I'm really annoyed with my pain clinic nurse as I spoke to her last year about them and told her I didn't see the point in wasting their time as I've been given the same exercises by the last 3 physio's, I was not made aware that they do more so am now back on the waiting list. My Mac nurse advised that this pain is naturopathic and will always be there and I need to find a balance between meds and "other things" yoga, meditation etc to help me cope. You sound like you've gone through hell, I'm glad you finally got help. I had thought about my G.P but I'm being told I need someone who understands neuropathic pain, I don't feel like the clinic has helped at all. My Mac nurse said she'd speak with the palliative pain care team to see if they have any suggestions, she agrees that the clinic has let me down but there's not much she can do apart from pass on my comments.

Tim61 profile image

Hi, TrinityMoon , I don’t know where about in the UK you are, but there is a specialised Pain service at Bath ( Royal United Hospital ), where the Specialist Professional Staff, help Patients with long-term Chronic pain. They do a monthly course Monday-Friday 9am-4pm each day. I’ve completed the course & it’s the best Pain Management course I’ve ever done. Hope this information is of some use . Take care.

TrinityMoon profile image
TrinityMoon in reply to Tim61

Hi Tim61,I'm in Scotland , I'm really interested in finding out of it's being held up here too. Is it run by the physio department? Is it called pain management course? Does it involve a lot of movement? I can have limited mobility of my upper body and easily tire. I'm in a vicious circle, exercise would strengthen me but exercising tires me very quickly and causes pain. However I'm willing to try pretty much anything if it'll help. Thanks for your help, sorry for all the questions


Konagirl60 profile image

Can you describe what the pain feels like? Does it burn? Throb? Spasm? Is it cutting?Where exactly is the pain located? Is it 24/7? Does it go away at any time depending on whether you’re sitting, lying down, standing or moving about?

Where did you fall and on what? Your back? Your buttocks?

Chronic pain is exhausting to live with if it’s not controlled. You’ll lose cognitive function if you don’t sleep. Are you able to sleep?

I had a pinched nerve in my pelvis. Ten doctors gas lighted me. I wasn’t given proper pain control for years. I almost died from sleep deprivation. I truly know what being dismissed and left misdiagnosed and prescribed ineffective medications feels like. Don’t give up!

TrinityMoon profile image
TrinityMoon in reply to Konagirl60

Hi Konagirl60,My pain is naturopathic, under my jaw, neck, lower back of head chest, upper back, shoulders and upper arms. Because I had similar surgery on each side of my jaw. I have nerve damage, I have a scar that runs from under my right ear across my throat and ends under my left ear. 2 surgeries and 2 different nerve pain. Stabbing, burning, feeling of something hanging around my neck, some areas are still numb and are likely to stay that way. Most annoying is the itching, the numb areas sometimes itch but no matter how much I scratch - a sensation I can't feel it still itches. I fell in my left shoulder around 3 months after 2nd surgery. This resulted in a frozen shoulder which was not diagnosed until a year later and has resulted in a weak and restricted left arm.

Isn't it horrifying how doctor's just refuse to believe people who suffer with Chronic pain! I know my body but nobody would listen to me, I believe the delay in diagnosing my frozen shoulder caused me a lot more pain. My amitriptyline has been increased to help me sleep, fingers crossed that will be one thing crossed off my list. My Macmillan nurse is really supportive and is trying to get someone to listen to me. Thank you for replying, knowing that I'm not alone helps and there's a chance I might get some help just from the useful information and support on here


Konagirl60 profile image

That itchiness might be rid of with the use of Hydroxizine Hydrochloride. I used it for several years post op. When nerves are irritated mast cells migrate to the sight. They release histamine.

Have you tried an over the counter anti histamine at all?

I’ll be here for you whenever you need a friend. Hang in there.

I hope you have a really comfortable mattress and pillows.

Benlesser65 profile image

Living in Chronic pain is never easy worse still people atimes are unable to get access to the meds they need. Together we can fight against chronic pain

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