Can't feel bottom of legs

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This topic contains 28 replies, has 3 voices, and was last updated by  lc 2 weeks, 6 days ago.

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  • #46853

    Di
    Participant

    Pain in my spine has been horrific for weeks. I have the T12 nerve trapped which my pain consultant says is the cause of vibration down my abdomen and legs but that has only ever affected my left leg and abdomen. Got up this morning feeling as if I’m wearing really tight knee socks. Both legs from calf down to toes prickling and burning. One ankle top is a strange colour and I have awful difficulty bending my ankles. I can walk but bith legs are so painful and vibrating.

    On top of a heart attack, now heart fluttering randomly, seriously bad adhesions ripping on my spine from vaginal mesh; don’t think I can take any more.

    #46854

    lc
    Participant

    Hi Di, So Sorry to hear your having a really rough time from all this,if your ankle is a redish blackish blue I would advise you to get advice from your GP on an emergency basis , if you cannot get there within the next couple of days, get someone to take yo u to hospital,ASAP especially if your getting palpitations and legs feel hot or warm to touch and is painfull to touch it could be DVT. especially as you have already had a heart attack. that’s the trouble with such a high spinal problem it causes so much more problems, as mine is all from L4/5 Down. I would go to A+E anyway just be on the safe side, sorry I dont want to scare you but better safe than sorry. Hope you get it all sorted soon Di, and let us know how you get on , Take care and best wishes, Lee

    #46855

    lc
    Participant

    Hi Di, Is your vibrating feeling constant? as mine comes and goes when I have sat to long or stand still to long or been on my feet and keep pushing when i really need to sit/lie down. also If your having trouble to cope mentally maybe you need some CBT to help you. Keep in touch with us to let us know how you are keeping from time to time as this helps talking to others who understand what living with pain is all about. take care and best wishes. Lee

    #46856

    Helen H
    Participant

    Hi Di- sorry you are going through all this. Just to say, I hope you got some help at A & E, and we are thinking of you.

    Take care
    Helen

    #46858

    Di
    Participant

    Thanks all. I have an appointment tomorrow afternoon with the GP. The tingling, prickling pain eased slightly as the day went on but never went away and tonight my ankles are really tight and painful. Googling, which you should never do, has everything from Fibromyalgia 9 never knew fibro could cause that) to peripheral neuropathy, MS, discs, sciatic. I’ve had the tight ankles since 2016; I found an old post on here with he date; but it’s never gone up my legs. I Just can’t tell why or where it comes from. I do get a sharp pain down one thigh unless I twist my leg but I also have terrible pain right at he bottom of my spine as well as T12/L1 level; another disc gone in my upper back which makes it impossible to tell if it’s heart, stomach or back. The post heart attack aspirin is crucifying my stomach unless I take double dose ranitidine. ( I’m allergic to LOsec). This is just the last straw. I can’t take much more. I stopped smoking but started again because of the stress and pain and a little voice keeps saying “If you smoke it will cause another heart attack which would probably be fatal but then you’d be out of pain”. I’ve done CBT, counselling for chronic pain, seen pain consultant. The GPs don’t have time to listen or put it all together and see just how badly I’m coping now. I do all the relaxation, breathing etc on here but I’ve had enough. IT’s been 20 years now of the severe pain and 20 years before that just with FIbro. If I were a dog I’d have put me out of my misery years ago. God tat sounds awful. I’m not going to do anything daft- I have a son and a dog but truly I just want it to stop.

    #46859

    Di
    Participant

    Sorry to ramble. I should have said I’ve been convinced for years that this is all Lyme disease. Back in the 70s I came back from the USA and developed the typical 4″ bulls eye rash on my leg. A dermatologist noticed it and tested for LYme but it was within a week of the tick bite so gave a negative result. I’ve had one more negative test since but the test is so unreliable and I don’t think anyone knows how to treat chronic Lyme.

    #46861

    lc
    Participant

    Hi Di, Ok Di now you have given a bit more detail, I’m not sure what to say to help, but it sounds as though you have done a lot and already have the tools to help yourself,I think sometimes people go back to CBT for a refresh their mind and confirmation that what there doing is right , keep on doing all things like relaxation breathing ect as it does help to calm the mind , I think you have a lot going on all at once , and sometimes as the mind is always working it sometimes runs away with you and is difficult to control, I had a bit of an episode just last week, the mind was running off like a full steam ahead train with no brakes and I found it quite exhausting to get myself in a calmer and more settled mood. I’m not patronizing you at all and sorry if I made you feel like that i was.
    I understand that a minority of people do get Lyme disease effects many years after, and that drs think that with the original bite they can and most people recover when caught early with antibiotics.also most effects that people get years later is similar to fibromyalgia or chronic fatigue syndrome and is difficult to tell if it is Lyme disease, I think there is 2 blood tests to confirm if it is or not , but it’s getting your GP to to get them done.
    I understand how you feel as I get like that sometimes when there is a lot to cope with, and even said to my surgeons and Gp that you wouldn’t let an dog live in constant pain, they just don’t know how to answer that. By what you have said It could be just a bad case of nerve irritation and inflamation that is causing all this, and as you have had a heart attack it has sent your nerves on overdrive,or it could be a collection of problems, But I could be wrong, as I’m no Dr. I hope you get to the bottom of all this when you see your GP. and that they help you to get all this pain under some control. Hang on in there Di, take care and best wishes. Lee

    #46868

    Di
    Participant

    Yes the vibration is constant but a lot stronger if the bowel is full or bloated and seems to rest on teh nerve and magnify the sensation. My whole body vibrates and the optician says it’s making the jelly behind the eye go into clumps so my vision is covered in tiny black specks- not floaters, my whole vision. Scary

    #46869

    Di
    Participant

    Well, the GP visit was a total utter waste of time. I have never before lost my rag with a GP but I did with this young chap. First question “What do you want me to do?” Your’e the doctor- you tell me. Tell me what’s causing it and do something o fix it and do NOT just throw painkillers, anti epilepsy drugs and anti depressants at me. After 30 years of pain, they do not work. Gabapentin makes me suicidal, I can’t function on amitryp. HIs answer? Gaba, Lyrica or amitrip. That was when I lost it! Oh and CBT. I’ve just finished CBT. I did a self referral after the heart attack.
    He ended up prescribing SSRIs which cause stomach problems and an erratic heartbeat. seeing as my heart has started fluttering uncontrollably and they are still trying to find out why, adding to it is not a good idea.I’m also taking double tablets to try to control the pain and bleeding the aspirin is causing in my stomach. What an idiot. He insisted it wasn’t coming from my feet but from my spine- so why are the tops of my legs not affected? Last night I did some exercises for tarsal tunnel syndrome and today my legs are much easier. Having to see a new GP every time who has no idea about your conditions is a waste of time and dangerous.

    #46870

    lc
    Participant

    Hi Di, Oh Dear that was not very good, are you still under the pain clinic, ? I think that would be my next point of call just to get pain under control, until they find out what is actually causing all this, you can get what is known as referred pain when ie the actual problem is somewhere in your spine, but you don’t feel it there, and the pain comes out iether in arms or legs/feet.but you probably already know this. Gabapentin /lyrica and all the other make me feel like that, I have adverse reactions to, or just makes me feel suicidal ect. the only one I can take for nerve pain is Amitriptyline ,if that stopped working for me. I not sure what I would do next,but back to pain clinic and not sure what they would do except SCS but as I have already had surgery, they already told me they are reluctant to do any more surgery unless absolute neccessary ie lose bladder/bowel control.as they are scared that I will be paralised , I told them I would rather be paralised from waist down with no or minimal pain than be like I am, but its unethical , back to the dog situation. and round and round we go. it sounds like all GP’s surgeries are like this, there is no consistency in your treatment these days. To many cuts and over-stretched GP’s.
    If you found that the exercises you did, helped in some ways then I would suggest to carry on with them, and try some gentle stretching ones for your back and spine ,just to see if that helps. Sorry not sure what to say to help you as you seemed to have done it all, like myself, it’s a case of taking bits from all you know that helps you in some way. Hope you get some help from some where soon, like the pain clinic. Take care and best wishes, Lee

    #46871

    lc
    Participant

    Hi Di Forgot have you tried Lidocaine patches? that might help your neuropathic pain.
    take care and best wishes. Lee

    #46873

    Di
    Participant

    NO, I have nothing like lidocaine and anyway it affects my heart and having had a heart attack I wouldn’t dare. I just read that statins can cause neuropathy although rarely. IT’s much worse today and feels to have moved up into my thighs I’m very wobbly walking. NOt helped that I have bakers cysts behind both knees and both feel to have leaked sending the usual burning pain down my calves but that’s different to the shins. I now have numbness and pain in my tailbone where I sit on it. The GP I saw refused to accept that something new could have happened and just assumed it’s the spin pain I always have at T12 even though T12 doesn’t go near your shins and ankles. It all goes up the outer front of both shins. Oxynorm not touching it at all and I’m shaking with pain.

    #46874

    Helen H
    Participant

    Di- I am so sorry that you’re going through this. Many of us have times when we feel as if we are losing our minds because the pain is so overwhelming. Hang in there and get through bit by bit. When pain is off the scale I often set an alarm for every hour or every half an hour, which I find is more manageable than thinking of the whole day or the whole night.

    Is there another GP at the practise you could see or speak to on the phone on Monday?

    Is there a friend who could come into an appointment and advocate for you?

    Do call the Samaritans if you need someone to just listen- I have done this in the past and it really helped when I was overwhelmed. Keep telling yourself you are doing your best.
    Take care of yourself kindly
    Helen

    • This reply was modified 2 months, 2 weeks ago by  Helen H.
    #46876

    lc
    Participant

    Hi Di, if oxynorm is not touching the pain, and your in that much pain, then the only thing i can suggest is to go to A+E to get your pain under some control,and get a referral to pain clinic on a emergency basis. if you have been under pain clinic just ring them, and tell them its urgent.
    or as Helen suggests ring GP as an emergency and get to talk to one over the phone or for one to come out to you. hope you get sorted soon. take care and best wishes . Lee

    #46877

    Di
    Participant

    I have an appt with MY GP.the one who actually knows me and how I react to tablets and is in charge of my heart treatment on the 17th. I will have waited 5 weeks for that. I really wish I could have got down to see the one who rang me last MOnday. She’s very brusque but she gets things investigated but it was morning and I could’t get there on my own.
    I’ve tried the local urgent care centre before when the pain has been out of control but they never offer anything except Gabapentin which I simply can’t take. When I was admitted with suspected cauda equina I wasn’t even given my oxynorm on time. I Know it’s difficult every 3 hours with a controlled drug but they were often an hour late by which time I was in tears. One night it was so bad I went out into the corridor crying so as not to wake anyone and a nurse ran up with raised fist and shouted at me to shut up before I woke someone. Oddly on the cardiac ward when I had the heart attack, I was in charge of my own pain medication but the medical ward took it off me.
    My pain consultant won’t see me for 12 months even if I phone and it’s a good hour’s journey away right round the far side of Manchester.I might get a phone call from him. The next nearest is almost an hour in the opposite direction. A&E is 40 minutes drive and I have no one to take me. I Just can’t drive that far now. An ambulance won’t take my scooter and I can no longer use my wheelchair because of shoulder damage. I can only use one arm. When I had the heart attack I was left in A&E behind locked doors on a corridor for 5 hours unable to even get to the toilet. It’s a horrible place.When I went to the pain clinic only about a month ago, the hospital transport wouldn’t take my scooter either even though it’s half the size and weight of my wheelchair.
    I have a feeling this may have been caused by my statins so I’m stopping them until I can get to see a GP. My cholesterol is very low so it won’t harm.

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