Neurology appointment

[Jan1964]

Hi guys,

I have just had a video call with a neurologist from Walton center and for the first time, since diagnoses in 2015, I have had a full explanation of my symptoms.

First he explained that the pain receptors in my system have been switched on by a past injury, mild head trauma and neck injury. He explained that I was treated with pain relief and this is now part of the problem. He explained that the pain message is increased by the nerve endings as they want more pain relief, a bit like the way the body want caffeine. Anyway the receptors increase the pain signal and ofcause the doctors increase the medication which becomes a bit of a chicken and egg debate.

For years I've been saying I don't want more pain relief, I want a treatment to stop the progress of symptoms. He agreed and said that as the injury that started the cycle has healed, we could try a slow reduction of pain relief and introduce disease modifying medication for the arthritis and amitriptyline for night time to try to improve sleep.

I'm relieved that finally I have hope for a reduction in the pain I feel daily without being drowsy all day from massive amounts of pain relief. I want my life back and although I probably haven't explained this half as well as the consultant, I can understand why the latest research is encouraging reduce pain relief as pain levels increase. He was honest with me and told me that I will get worse before any improvement but I want to give it a try.

I wanted to share in the hope that this may also help some of you, as I know how important a bit of hope is when your life has holted due to pain.

Hugs and best wishes xx

[Welshcatlady]

Good morning, what your neurologist has suggested is really good, and hopefully with his and/or your GPs help you should be able to wean off the painkillers and get back to a more normal life. You don't say which painkillers you are taking but you will have to reduce them slowly. I'm sure he explained that to you. I have recently come off my pain meds, Co-codomol and Gabapentin. The Co-codomol I was able to do myself, but just reducing 1 tablet at a time over many weeks, once I was successful with that I turned to my GP for help with the Gabapentin and now I don't take Gabapentin at all. Now if I get moderate pain I take Paracetamols and if my pain is severe I take Co-codomol, (never both at the same time!). Where I was not getting much if any pain relief before, the painkillers work, so my pain is much more controlled, although I am never without some pain or other. I wish you well in your efforts to reduce your intake of pain killers and hopefully you will come out the other side feeling so much better for it.

[Jan1964 in reply to Welshcatlady]

Thank you Welshcatlady, I'm on co-codamol 30/500mg, 2 - 4 times a day, Naproxen 500mg - twice a day, Amitriptyline 20mg. I refused to take Tramadol as I was concerned about driving on it, and have already stopped Gabapentin, easy as it made me vomit lol.

I've always been reluctant to take pain relief and tried physio but she referred me back to neurology before she was prepared to continue with exercise.

Long story of operations on shoulders, cervical spine, hips and knee replacement, still in my 50's and need to work financially and have a lot of time I want to spend with my grandchildren. So any improvement will be welcome xx

[Welshcatlady in reply to Jan1964]

As I said it will take time for you to completely come off the pain meds, but in my experience it was definitely worth it. Since coming off them I have bought a weighted blanket that helps with sleep, it makes me feel so cosy that I soon drop off to sleep, and I often wake hours later in the same position as I went to sleep, whereas before I was having very restless nights. I also use a Lavender spray on my pillow, which again helps you relax. Good luck and hopefully you will see some improvements soon so that you can spend quality time with your grandchildren. x

[Patdoyle]

Glad you got a good experience with the neurologist. I asked my GP to refer me to the Walton centre but still no appointment has come. Did you wait long and are you in their area.

[Jan1964 in reply to Patdoyle]

Hi patdoyle, I'm not in the Liverpool area but just in the English side of the Welsh border. I'm afraid it was a long wait. I was first referred over two years ago and re-refered in August 2020 as I had not received an appointment from the first referral. The physio pre-empted the appointment by sending me for MRI, blood tests and a cat- scan, and he quoted the results during the video appointment saying it was helpful to have the results but needed further brain scans before he can fully plan the new treatment regimen. Hope you get some news soon xx