Chronic pain in wound under foot

[salamander160]

I had my toes amputated last February 23, I am still having the wound dressed and the lower limb nurses are using compression bandages. When they clean under and on the inside of my foot, it really hurts, the pain is getting much worse and it seems like nothing really helps it. I also suffer from oedema, being in a wheelchair, my legs are down but have to elevate them as much as I can. The pressure from the fluid increases the pain and the pain is unbearable and again very little touches it. The last few weeks, the pain under my foot has got so bad, it is really affecting my mental health. I have spoken to my Gp about all of this twice this week, I have done an e consult, spoken to 111 twice tonight, they sent paramedics out, they wouldn't take me to hospital as there is no sign of an infection. I spoke to my neurologist last week, I am speaking to the pain clinic in a few weeks time. This pain is really getting me down, Something is obviously going on that they cannot see, there is nothing visible. I really don't know what else I can do to stop this burning pain. I am taking gabapentin, codeine, ibuprofen, paracetamol. and oramorph when i need it. I took 10ml tonight, the paramedics told me to take more. I am at a complete loss!!

[ftorres18]

I'm so sorry to hear about the pain you’re going through. I can’t imagine how frustrating and exhausting this must be for you, both physically and emotionally. From what you’ve described – the burning sensation, the pressure from the oedema, and the constant pain – it seems like there’s something else going on, and I completely understand your concern. I’d like to share what I think might be possible causes and some options that could help, though of course, the final word will always lie with the specialists.

Possible causes of the pain:

1. Neuropathic pain: It’s common after an amputation for the nerves to be affected, causing sensations like burning, stabbing, or intense pain. This might be related to what you’re experiencing.

2. Pressure from oedema: The fluid buildup in your legs could be increasing the pressure in your tissues and worsening the pain, especially when your legs are down.

3. Circulatory issues: There might be an issue with the blood flow in the affected area, which could be making the pain and swelling worse.

4. An undetected internal issue: Even though there are no visible signs of infection, there might be something deeper, like tissue damage or trapped nerves, which isn’t easily identified without more detailed examinations.

Options that could help:

1. Reviewing your medication: It might be worth adjusting the doses of what you’re already taking or adding other medications specifically for nerve pain, like pregabalin or amitriptyline. These could help manage the pain better.

2. Topical treatments: Lidocaine patches or creams like capsaicin might provide some relief for the burning sensation. It’s worth asking about these options.

3. Adjusting the bandages: Discussing with the nurses whether the compression bandages can be modified could help ease the pain while still managing the oedema.

4. Proper leg elevation: Keeping your legs elevated above heart level could help reduce swelling more effectively.

5. Consulting with other specialists: Seeing a pain specialist, vascular surgeon, or even a wound care expert could offer new insights and more targeted treatment options.

I know this pain is affecting not just your body but also your mental health, and that’s entirely understandable. The fact that you’re already seeking help and speaking to different professionals shows how strong and proactive you are. If you feel like your concerns aren’t being addressed as they should be, I’d be happy to help you draft a letter, message, or email to express your situation – whether it’s a formal complaint or simply a clear summary of what you’re going through. Sometimes that can make it easier for doctors to understand how this is impacting your quality of life.

I’m here if you need anything. This isn’t easy, but I truly believe that with the right attention, you’ll find relief.

Take care and stay strong.

Francisco 👍🙏

[salamander160 in reply to ftorres18]

Hi Francisco, All of the above makes sense and i have muted these suggestions to my Gp, pain doctors and nurses, neurologist, orthopaedic specialists, the nurses who do my dressings, nobody but nobody seems to be able to help, yes it is very frustrating and demoralizing. I have just spoken to an out of hours Gp but absolutely no help at all, I think there is something going on beneath the skin, they have checked me for osteo myelitis, that seems ok. I have definitely got neuropathy and neuropathic pain, I have had to reduce the gabapentin to 300 mg 3 times a day, i was piling on weight, 17 stone is too much to manage but when I was taking 600 mg 3 times a day, it wasn't helping much. They tried me on the lidacaine patches but can't put them near the wound because i have toe to knee bandages. They also tried me on clonadine but that increased my heart rate and I felt really unwell. I had encephalitis when I was six years old and when I came out of Great Ormond Street hospital, they diagnosed distonia, I have been struggling over the last 50 years with spasms, muscle contractions, etc, I seem to be getting more of these now my foot has been chopped up, almost like the tendons are flexing, it is sickly pain when that happens. Obviously I will get phantom pain but this should not be as painful as it is considering the operation was February 23, it should be settling down now you would think. I have never really had a full up-to-date diagnosis. But I do wonder if some of the problems are related to my original illness? Again, nobody seems to want to do anything to help me resolve some of these issues. I do think the fluid levels are causing massive problems, they all keep blaming this on the fact that I am in a wheelchair, that is the easy answer, the Gp I just spoke to said liver issues can cause fluid retention, they have never looked into this. If I take antibiotics, it seems to clear up the fluid issues, that tells me that there is something unusual going on somewhere. I feel like I am hitting my head against a brick wall! Somebody really does need to get to the bottom of this, Anyway, thank you for your response. Adrien

[Ticktick]

Dear Salamander 160My heart goes out to you

Yes it's intolerable neuropathic pain

Gabapentin 600mg twice a day helped me get over my brachialgia pain

But did take more than a month

Ftorres18 has said it all regarding your pain

Hope that helps

Sending prayers and best wishes

Get well soon

Take care

[salamander160 in reply to Ticktick]

Hi, thanks for your response. yes it does take time but unfortunately some issues don't go away but just need to manage them. You take care too.

[Ticktick]

Hi dear Salamander 160You are very welcome

Sadly yes some issues don't go away

I can understand how you feel

God bless you and keep you in the palm of His Hand

Thank you

Take care,please?