Phantom limbs pain

[vasco]

Has anyone experienced phantom limbs pain as a post meningitis amputation complications?. Has it got treatment? Or how could someone handle it?

[StrawberryCream]

Hi Vasco. If I recall rightly from my many years as a nurse, phantom limb pain happens to anyone who has had amputations and not just a post meningitis amputation complication. People I nursed would often be totally convinced that the limb was still there. I do believe that there is prescribed medication that helps with the symptoms so it seems you have to go bug your GP again! I seem to always be at a hospital apt or GP surgery myself these days whereas previously I kept away. You have my empathy. Yet another post meningitis residual effect for you to deal with. Sincerely hope that other aspects of life are progressing in the right direction for you? Best wishes Cx

[vasco in reply to StrawberryCream]

Hi strawberrycream,

You absolutely nailed the description of phantom pain experience. I always think the amputated limbs are still there. I would struggle to plant my feet on the ground to hold my balance but would always fall forward or backward. I feel the pain as if the toes are still there. I would have to consult my gp as you said. But my fear is that my gp seems not to know much. I might have to ask for referral. At the moment, I am on 7 different pain killers, yet the phantom pain doesn't go away. It looks like I would have to add more medication to the ones I am taking at the moment. Thanks for your advice

[StrawberryCream in reply to vasco]

Hi Vasco. I have since done some looking up on the internet and now realise that pain killers don't work for Phantom limb pain and it is re educating the brain that can give some relief. Canada has given you more accurate advise about what to do to tell your brain that your digits are no longer there and its the nerve pathways that have been severed that the brain needs to comprehend. Do you not have a physio or any specialist involved that could help you with the things that Canada has described. Otherwise it is back to the GP to see if they can refer you for help.

[vasco in reply to StrawberryCream]

Thank you again strawberrycream,

I had a physio but she quit her job recently. I'm still waiting for a replacement. I will have to keep talking to my gp though he must have had enough of me by now. I hope Canada will come back with more information on this. Cheers

[legless7397]

I lost both legs below the knee to meningococcal septicaemia 6 years ago and can empathise with the pain you are suffering, it took a while for the docs to get the medication right but now I am pretty much pain free, although I do sometimes get what I call electrical pains where it feels as though someone has touched my stump with a live electric cable. I was referred to our pain clinic who helped sorting out the correct medication. Hang in there but be truthful with your GP let them know how this affects your quality of life and that you need some intervention to help deal with it, I am now fully mobile on prosthetic limbs and rarely have any discomfort.More than happy to chat about this if that is required.

Take Care

legless7397

[vasco in reply to legless7397]

Hi legless,

Thank you for sharing with me from your experience. I equally get the electric shock sensation every now and then. It's so painful especially when I have fixed my customized shoes. Sometimes, I have to undo my shoes to rob on them. I think I would have to keep talking to my gp. I know he must have seen enough of me by now. Presently he'd referred me to a neurologist and ENT specialist. But can the neurologist do something about it?

[Canada3]

Hi, I agree with the first answer (strawberry cream). As a physiotherapist I saw lots of phantom limb problems after vascular surgery and traumatic amputation of legs and also fingers. I guess the message from your brain still goes to where your leg ended and removing it doesnt stop that connection. There are quite a lot of things you can do though. The most obvious thing to bombard it with information i.e. gently tapping and stroking the stump, as the less it is touched it seems the more hypersensitive it becomes. Under some supervision initially you could use a TENS machine on a low setting, again bombarding the hypersensitive end of your leg with a sensation that is not pain. I assume you have one normal limb (or did you sadly lose both?) because there is a new approach to pain by using the opposite side. I know it sounds strange but it is done with the use of a mirror box, or by not looking at the painful limb and concentrating on normal movement to the intact one. I am racking my brain to remember (ha... meningitis head!) the name of the research papers. I promise to come back to you on this one when I get that information to the front of my brain again.. may take a day or two! It is a system used primarily in complex regional pain syndrome and has had some great results. Fooling the brain to think the painful side is the normal side, because of the cross-over in the brain of neural sensation. Sorry if I lost you I got carried away ramblng. Hope some of this makes sense. Get back to me if not please.

[vasco in reply to Canada3]

Hi Canada,

Thank you so much for your input from the physio therapist point of view. To be quite honest, the pain could be discomforting. The treatment you try to explain to me seems complex to me. My physiotherapist has quite her job recently. I'm waiting for a replacement. I neither have the knowledge of tens machine nor the mirror box. I am amputated on both legs, so can't fool my brain with any of them . I m currently on so many painkillers but the pain doesn't go away. I might seek the help of a specialist. I do rob on the stumps when the pain gets worse. Is there any other way to fool my brain? I eagerly wait for you to tell me more when you have remembered the information. Thank you once more

[legless7397 in reply to vasco]

Vasco one thing that helped me initially was to join my hands together by interlocking the fingers and the run then over the end of the stump with the palms facing you, but without contact therefore letting the brain know that the limb is no longer there, I was also advised to frequently massage the stumps which also helped.

[vasco in reply to legless7397]

I do rob the stumps now and them. But my problem is when I have already worn my shoes. It takes me time to put on my shoes and wouldn't always want to keep removing them. It's stressful. Thank you though

[Canada3]

Hi again Vasco... sorry I should have asked the question about bilateral amputation. There are some specific medications I think maybe Gabapentin or Pregabalin which work better with neurological things, but you would need to check with your medical staff. Some pain specialists use a chilli based cream which is a counter irritant. The TENS is just a small current of electricity which bombards the area with a different sensation, they are available in Boots for about 10-15 pounds and OK as long as you dont have any breakdown of tissue.. but again please check with any medical person who looks after you. There is something on Utube about phantom limb pain and mirrors, have a look. David |Butler is the physiotherapist from Australia who has done a lot of neuro work and I think he advocates not even buying a box just using your wardrobe mirror. But it is really difficult to imagine unless you see it for yourself. I am just not certain whether you can do it with a bilateral amputation I'm afraid. Melzack and Wall are the chief research people on phantom limb pain, one of whom is dead now but they've written copious amounts of stuff. When I find the other research I will let you know, but it may be that you habe to have one intact limb in order to fool the brain if you know what I mean. Utube shows you just put in phantom limb pain and mirror boxes or CRPS and mirror boxes on utube. Amazing that all this is at least available on line I guess as long as its legitimate. Sending a prayer and a hope for you.

[vasco]

Thank you so much Canada. I have talked to my gp about it. He has now referred me to a neurologist and ent specialist. I hope they would help me out to sort it. I will watch the you tube as you suggested. I had bilateral amputation, so the mirror box wouldn't work for me. But you have given me enough insight into phantom limb pain. Cheers

[ignoreit in reply to vasco]

Hi Vasco,

You mentioned that your gp has referred you to an ent specialist. Do you mean an ear, nose, & throat specialist? How could an ent specialist help you?

[vasco in reply to ignoreit]

Hi ignoreit,

Yes, my gp referred me to ent specialist because of my vestibular dysfunction. I struggle a lot with my balance. I'm constantly having dizziness and vertigo. My gp said that my vestibule -organ for balancing located inside my inner ear was damaged by meningitis. That is why I keep falling every now and then.

[Jennyoxford]

Hello, my daughter had 4 limbs amputated below the joints nearly 2 years ago. She was never given any medication to deal with her limb pain. She was nearly 3 at the time and now nearly five. The first six months i would say were the hardest she would wake up in the night and kick out and it would last for around 30 mins. I would try the rubbing on the ends of the legs like i had been told. When i would ask her where the pain was she would point to where her legs would have been. One particular day we were talking about painting her toe nails as she had just got some false legs and we were talking about shoes etc and this caused alot of upset and pain in the night. Sometimes she will complain of pain if she touches something or knocks the ends of her arms. She also used to complain wheni would sit next to her where her legs would have been, so i would sit down quickly and if her legs were there i would have sat on them, she would say owe as if i had sat on them.

I have been told that childrens brain often learn to deal with it alot better as the brain can adjust and change as it grows.

Do you mind me asking what Limbs you lost?

Take Care

[vasco]

Hi jennyoxford, omg! The 4limbs! It must have been pretty devastating! ! I'm really so sorry to hear your little angel's ordeal. It must have been too hard for her and yourself. Such a situation could be frustrating. I had all my toes and soles amputated. I feel the pain where my toes would have been.

[Jennyoxford]

Hi Vasco it was devasting but Charlotte is a truely brave child. She has a good quality of life and she does her best at everything. She doesnt let anything hold her back and i know she is going to have a great future, even be in the paralympics maybe! Really hope you continue to recover and remain positive.

[vasco in reply to Jennyoxford]

Hi jennyoxford,

I totally agree with you. Your Charlotte is a fighter. She got a strong spirit. Believe you me, she could do excellently well in paraolympics with that type of spirit. she got her future right before her. I wish her well and you too. Trust me, you are doing a great job. Bravo! !!!

[ignoreit]

Hi Vasco,

I just read something VERY interesting! Our nerve pain from BM & septicaemia is different from the pain that other amputees feel. My BM was 35 yrs ago but I still feel bad pain in my feet. My toes were amputated unevenly via debridement but each "toe" hurts 24/7, regardless of how much of it is remaining.

My dr has just started me on Gabapentin. It's for seizures but for unknown reasons, it helps our nerve pain. I can't tell yet if it's working because altho it's to be taken twice a day, my dr has started me on just once a day just before bedtime.

Have you ever tried Gabapentin?

[vasco in reply to ignoreit]

Hi ignoreit

Really? I have been on pregabalin which has the same constituent as gabapentidine. The side effect has been so off putting to me. I have added a massive 15kilos on top of my weight already. I am so obese now and the impact on my feet is killing me. I have no option.