Hello everyone I am desperate for some help, I have excrutiating pains in both legs and very close to calling life a day, I have to take lyreca for nerve pain,co-codamol 30/500mg and dihydrocodiene is there anthing like ice packs or something I could use to keep these burning crawling pains at bay, I have phoned doctors on call and all he could offer was more of the same medication, I found him about as much use as a chocolate soldering iron!
not dx yet , Im a man by the way and not ashamed to say I could cry my heart out
Hi Anon - really feel for you pain is hideous. There must be other drugs that can help you. Sorry but I don’t know of any but I’m sure others will. You could also ask for a referral to your local hospitals pain clinic Hugs Min xx
Hi there, I am so sorry you are in so much pain. If the on call doctor was no use perhaps you ought to take yourself to A and E where you may get some immediate help. I hope someone gives you the help you need. Please try to hang in there, I know life is dreadful for you at the moment but if you do get help it could change instantly and you would feel better. Don’t give up - keep at the health professionals until they aid you. Teresa xx
The first thing I would say is that cocodamol and dihydrocodeine will do very little for nerve pain. Instead I would recommend upping your lyrica - the max dose is 600mg a day. If you are already at that level then you could add a different type of neuropathic painkiller such as amitriptyline. Burning and sensory symptoms are not “real” pain - they respond to drugs that suppress the nervous system, not painkillers. Until you get more/new meds, you could try ice packs. They can help with burning, even though it’s not “real”. Alternatively, try a heat pad - some people find they are more effective. It’s all about overriding the fake signals with real ones. Distraction can also work - video games are great for this. The brain can only pay attention to a limited number of things at once - so give it more and it will stop paying attention to the pain. Hth. Karen x
Hello everyone I am now on Lyreca for pain, I think they call it pregabalin it seems sometimes to work and sometimes not, however it’s only been a week.
very wary about the neuro appointment, thank you all for caring
When you get the right medication you will feel so much better.
When do you see your neuro? Is it a first appointment?
Not sure what to advise as you haven’t given us many details.
Do you have a secretary number for the neuro? If you do you could call to see if you can get your appointment bought forward as you are in so much pain. Alternatively you could ask the secretary if she could speak to the neuro as the pain is unbearable and you need some help sooner.
My gp is reluctant to give me any medication that is related to my ms and i always have to get the neuro or ms nurse to tell my gp what i need. When i mentioned pregabalin and gabapentin for neuro pain he didn’t know what they were. A gp will not question the neuro.(in my experience)
As Teresa has said - if you still can’t get some help - get to a&e. You really should not have to cope with this level of pain.
Hi there Anon.
If your leg pain is something like feeling that every bone and muscle were being separately squeezed in a vice - then you are already on the second treatment option.
Gabapentin is the first one. Luckily I am not yet on the maximum dose, but if I hit that point, then Lyrica (aka Pregabalin) would be the next one that would be prescribed for me. That could mean tapering off the Gabapentin, and then working up to the Pregabalin dosage that worked - and this could easily take a couple of weeks with pain in the middle. I would not like this to happen, as Pregabalin and alcohol are not a recommended combination, and a glass of wine is one of life’s few remaining pleasures.
It is - just - possible that Gabapentin would work better for you, and a visit to your GP (since you do not yet have a Dx) to ask about this, and/or amitriptyline as Karen suggests, might be a smart move. Min’s idea of a trip to A&E, or Teresa’s suggestion about the Pain Clinic are both good ones, but since you really need to be referred to the Pain Clinic, it might be best to start with your GP. Another idea, if you have a good District Hospital nearby, could be try a phonecall to the “Neurology Nurse” and dump your problem onto her. If you have already seen a Neurologist, but are waiting for a Dx, this might just be the best option.
Whatever you choose, please do not give up - there are still some options available to you. Some, like Karen’s suggestion of icepacks, or heat pads (or even both alternately) are things that you can try yourself (yes, you really can fool your own nervous system to some extent) and when you get to talk to a health service professional, you can say that you have tried a simple treatment already. As another alternative, try the MSS Helpline on 0808 800 8000 or mail them on helpline@mssociety.org.uk.
Above all, remember that most of us here have been through something like this already, know what it feels like, and will always try to help.
Hi, I swear by amitriptyline. I too was wracked in pain and wanted out for a while. Then this wonder drug stopped my nerve pain, so I hope you find the same relief hun.
Man or woman…a cry does us the world of good sometimes.
Hello All I have my Neuro appointment next week on the 29th I was on Gabapentin which tapered of helping me, I was put on pregabalin, as Geoff said doctor tapered off the gabas and gradually increase my lyreca, I did try the ice pack and yes it did help thanks all.