Hi, I recently had my toes amputated on my left foot, well last February, the pain comes and goes, it is currently very bad hard to describe it but i am getting a burning stinging pain, heaviness, the pain is radiating up my lower leg, I am also getting a lot of spasms in base of foot. I am taking 600 mg 3 times a day gabapentin, 30 mg codeine when i need it, paracetamol, I take oramorph a couple times a week but mostly before a dressing change. I had to go to the hospital over the weekend because of the pain levels, thinking there may be an infection brewing but everything seems to be ok, I am at a complete loss knowing how to deal with this kind of pain. I am waiting for an appointment with the pain team at hospital, there's a year waiting list. I don't know what else i can do.
How to manage neuropathy?: Hi, I recently... - Neuropathy Support
How to manage neuropathy?
As you are in the UK, call 111. An NHS nurse will advise. I hope you get some relief.
Only an NHS nurse or doctor for that matter with working experience of this type of pain would be able to really help. Others will simply revert back to basic pain control which will not help.
I suffer with the same condition, it's relentless, I have it in my feet and lower leg muscles, unfortunately mine was caused through excess alcohol, I witnessed a couple of traumatic events and ended up with ptsd, and then I was using alcohol too black the problems out, however I'm sober for over 12 years now, and I'm still left with the legacy of nerve damage, I use pregabalin as my pain killer and also take mirtrazapine at night to help aid with sleep, the pains or sensations are described in different ways, hot, burning, pins and needles and muscle twitching, smoking and drinking alcohol are a bad combination and should be discontinued immediately, I also have B12 deficiency issues and this also has similar effect of neuropathy, I have 3 monthly injections to help with this condition but they both have morphed into the same feelings, a double dose of symptoms, there's an old wives "cure " many people use vics vapour rub onto the feet and wear socks to try and ease the pain, a good diet is essential, there's not many treatments that solve these problems, nerve damage is notoriously difficult to treat, and after 12 years my symptoms remain the same, I was always clutching at straws to wake up cured, try and retrain your brain to accept this condition otherwise you will have periods of depression, I know you're struggling but try and remain positive, best of luck!
Hi, Somebody else responded on this subject too, ringing 111 isn't always the answer, you get through to a call handler and they are not medically trained, sometimes the questions they ask even though are impoartant are not relevant and can be very frustrating especially when you are in a lot of pain and all the meds you are taking aren't really helping. I am visually impaired and for that reason alone I have never smoked, have been blind since the age of 6 so wouldn't feel safe lighting up, also in a wheelchair so again wouldn't feel safe as I wouldn't be able to react quick enough if I dropped ash on myself. I don't drink although like a shandy or a drop of cider sometimes but it is not worth adding more problems than I already have. Yes I get where you are coming from, learning to accept it is important but is very difficult when you are already going through so many other issues, it is just one more thing to deal with, having multiple health problems, even though I do have regular counselling is very hard to cope with, before my injury, at one time I just thought i was visually impaired, in a wheelchair and had epilepsy but a lot of other problems have been added to the pot and it is hard! The constant throbbing pain in my legs is becoming a worry, not sure what that is but it is getting worse, my Gp doesn't seem to be able to help, I am waiting for the pain clinic but have several more months to wait. I am interested in the vitamin b, I take multi vitamins but not necessarily enough of any one of them.
I think a proper supply of B12 is worthwhile,it helps with nerve damage, and also I think it's meant to help with any memory issues, I think they are saying it has got beneficial help towards dementia as well, and you can't overdose on B12 you just pass it through your urine, don't expect miracles from the pain clinic, there's also lidocaine patches that may help but putting them on your feet is a difficult task, but these contain a numbing agent in the patches, they've changed the name of these patches and I can't remember the exact name anymore , think they're called Ravol patches these days, I understand your frustration and how difficult it is to control this pain, I wish you a better outcome soon 😇
Hi, ok, I will look into the b12, anything to help with the symptoms. I take fish oils, they help a lot of things too. I don't have a problem with memory, not yet anyway, having had a brain injury, the omega 3 does help Ok you take care and good luck too.
I think you need a higher dose of pain medicine for such an acute injury. Gabapentin is for nerve pain and you might have nerve pain as well, but you are having pain from the surgery. Codeine is even weaker than the Vicodin I take a few times a day for pain from chronic blood clots in my legs. Gabapentin is not going to help much with more severe pain. For spasms you need a good muscle relaxer. Please ring your doctor and ask him about stronger pain medicines and maybe a muscle relaxer. Just be careful about addiction. I am some-what physically dependent on Vicodin. My withdrawal symptoms are mostly insomnia and increased pain. That's because I'm on a low dose of Vicodin.
If you get on some stronger meds, maybe some long acting meds. Just know that if you get to the point you no longer require them, you might have to do slow taper just to avoid withdrawal, Going into withdrawal from physical dependence does not mean you are an addict. You will also have withdrawals from taking Gabapentin if you are on it for a few months. Please go on reddit and read about Gabapentin withdrawal and how to do a slow taper if you ever need to come off of it. You won't have very many withdrawal symptoms if you do a slow taper. I take Gabapentin every other day because it helps me sleep while in pain.
I could actually manage on 30 Mgs of Vicodin a day and not need the Gabapentin. But here in the states, they're cutting people off their pain meds. I'm lucky to get what I have now and have to use my meds more strategically. What happened that you needed to have your feet amputated? Are you diabetic? I have a similar issue in one foot because blood clots destroyed my circulation. I also have diabetes and severe sensory-motor nerve damage in hands and legs. My nerve pain goes from numb, to a slight burning (like a cigarette lighter is burning me) to some bad lightening zaps of pain. My nerve pain is more of a numbness so far. But the bad pain only comes and goes. It is not constant. If it was constant, I'd probably have to be medicated round the clock. I hope that helps some. The main takeaway here is I think you're being undertreated for pain, especially so soon after a massive surgical procedure.
Hi, Thank you for your help. I actually scolded my foot 4 years ago almost, it wasn't healing, lots of infections, I am in a wheelchair and have lack of mobility because of my cerebral palsy and paraplegia. I am not getting the nerve spikes I was but want to reduce my gabapentin because I have put on a lot of weight since taking it or pregabalin. I am in the UK, not the states so things are different over here. It is hard to get to see a Gp, I am on several waiting lists, have been on the pain clinic list since last August, there is a 12 to 14 month waiting list. I am taking Gabapenting 600 mg 3 times a day, also codeine as often as i need it, up to 4 times a day and also ibuprofen and paracetamol. I have spoken to my Gp numerous times about the pain medication but it is always the same, I am getting all they can give me, i also take 5 ml oramorph when i need it, especially before a dressing change. When they dress my wound, they use conpression bandaging, when they do it tight, it agrevates the nerve endings, the pain is much worse then, currently, i only have a pad and bandages on my wound, I had to attend a&e at the weekend and the pain is much less, suffice to say the pain is worse with the compression but they insist I need it, keep the fluid off the wounds. I am getting a lot of discomfort I think because of my lack of mobility, my muscles are tencing, spasming. Also, because my legs have swollen up so often, my legs ache all the time. I am not sure if this is neuropathic or not, not necessarily related to my injury. I will get this sorted out. It does drag you down.
I really hope they get you all sorted out. Leg swelling can definitely cause a lot of pain. I get it after standing on my bad leg. I have increased pain when wearing my compression socks, but stopped wearing it and mostly elevate my legs to reduce swelling and pain. I fear more pain because it hard to get meds these days. Pain management will give you more options than your PCP. I hope you get less pain after your foot heals up. You can always message me if you need to talk.
Hi, I have had a lot less pain this week because I have had no compression on, they put the compression on today, and the pain is back to normal, it is very hard to control it, I have realized now that once the wound heals, I don't think I will need to take so much pain medication and hopefully my weight will go back to its normal level. I do now realise that the compression is aggravating the nerves in my foot. Thanks for your help and like wise, if you want to chat to me, you can message me too. Take care!
My heart goes out to youas I know what neuropathy pain is like and it is very difficult to explain and treat.
Unfortunately, you have physical wound pain which is the easiest to treat with normal painkillers. Then you have Neuropathy which is more difficult to treat, and then the phantom pain of amputation which is psychological however, nonetheless painful and for you, very real.
The surgeons deal with the pain of amputation and psychologists with phantom pain, while neurologists are best placed to advise you on neuropathies or nerve pain as it is commonly known.
The problem is that you need a multidisciplinary pain clinic to get the most effective treatment and advice. They do exist but usually have extremely long waiting lists.
Speak with your GP and ask for a referral. In the meantime, your wounds will heal which will get rid of one type of pain. Ask for a physio referral to get you back on your feet as balance with be an issue. Improving blood circulation will help reduce pain. Tell your GP about the spasms as this might be a simple mineral or vitamin imbalance which could be corrected easily.
Have you heard of mindfulness? If not google it and you will find easy instructions to help you channel your thoughts. YourGP can help you find information about classes near you. It will help you to deal with the pain and the altered image that you now face.
In short, there is no easy answer but you can start to help yourself by eliminating possible contributory causes and correcting them . This will take time, so reach out now for help.
You are probably diabetic too, so take what help you can get from this department too.
I wish you a speedy recovery.
M
Hi, No I am not diabetic but am boarderline, am being as careful as I can be. I know now that the bandaging is aggavating the nerves in my foot, no pain all week, no actual dressing on but as soon as they apply a dressing and compression, the pain returns, I am in a condry, want the wound to heal, hence the compression but not the pain, not a good choice to make of course. Take Care A
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