Periferal neuropathy

I have rheumatoid arthritis and lupus. I have now been diagnosed with perifferal neuropathy. My specialist says there is nothing he can do to help me but failed to explain what it is other than the arthritis is damaging nerves in my spine which send messages to my feet and legs. I have numbness in these areas that make me feel as though I am drunk. The only aid I have is a walking stick. Has anyone had this strange thing. Dido.

11 Replies

  • Hi there,

    Peripheral Neuropathy is when the nerves in your feet and your lower leg have tingling, pins and needles, or sharp shooting pains or all of these things. This is usually caused by pressure on them coming from the spine.

    I'm surprised that your specialist didn't offer to put you on Gabapentin, or Pregablin as these two drugs often help with Peripheral Neuropathy. I presume though since he is a specialist he may have good reason not to do so.

    I am not a Dr. and this is just my opinion.

    Maybe your GP may be able to help you?

    I hope that you get this sorted out as from what I understand of this condition it can be very painful.

    Good luck.

    GP. 😊😊

  • Yes definitely, both my legs go like jelly sometimes, it's almost like someone has given me one of those little chops to the back of knee that makes you fold up. It's most parculier. I only have a stick but I can't walk far with it.

    I have one foot that is numb along one side and its been like that for 2 yrs. And when I have told doctor in the past they have just said, Oh it's your nerves lol..

    I think I gave up a long time ago. I think it's just that we are the sort of ppl. That just except things and get on with it and don't want to feel like we are constantly at the doctors because they think we are all raving hypercondriacts cos they think that already.

    I think they make you feel like that because there isn't much they can do and its embarrassing for them so they make us feel this way.

    Luv Jan

  • Hi, I know exactly what you mean, I have been treated for RA for a few years, and it seems to be controlled by drugs, but since an operation on my foot have been told I have peripheral neuropathy, and fibromyalgia. I wobble like a drunk, and the pain is horrible, I have the tingling and numbness in my feet and hands, and my balance is terrible. I have been prescribed gabapentin, but only on it for a few weeks and not really much effect so far. I am due to see my rheumy in a couple of weeks, but if your rheumy has not prescribed anything it may be worth going to your GP x

  • Hi, I read your note again today and noticed you had an operation on your foot.  I have suddenly been in agony with my ankle,  I can barely put my foot to the floor.  I had an exray on my ankle 18 months ago and they said the bones were rubbing together. I have had a couple of steroid injections ., which makes it possible to get about with my stick. I cannot remember doing anything the pain is so bad even when I am in bed. It feels like my joint has seized up. Must get to the Dr's tomorrow, did you have a similar problem. Thanks from  Dido x

  • Hi bedfordlodgers1

    I am genuinely sorry to read of this and I sincerely sympathise. I have a compressed sciatic nerve and apart from the pain I waddle around like I am drunk. I also feel very clumsy as I appear not to be able negotiate around things and keep banging myself. I want to sincerely wish you all the best of luck. Please take care of yourself.

    All my hopes and dreams for you


  • Good luck and hope you start to feel a bit better. I have comp and it is painful

  • Have you had your B12 levels tested? If this is low then peripheral neuropathy can be a symptom.

  • Thankyou everyone for your comments. Most people can't understand my problem. I make sure I use my stick when I go out as I have had a few falls, you are right  about the feeling drunk bit but I suppose my brain is not sending the messages.  I also have trouble with vision in my left eye which make things worse. Am going to ask my doctor if its all connected{ If I can get an app}. My rheumy says its the arthritis causing the damage.  Thankyou again . Dido

  • Morning  yes I know exactly where you are!   I get it in my big toe and the next two little piggies on the left.   Like  pins and needles  that won't go away and numbness not dumbness.

    Warm water  or a hot  can help!    So can ice  but on me that worsens the problem.  Apparently worse if you are diabetic!

  • I was wondering if anyone has been diagnosed with ms after having been told that I have peripheral neuropathy, I have been waiting for an appointment with a neurologist for 7 weeks and my numbness is getting worse, also my vision is all over the place which makes me very unsteady when walking about. My RA is as painful as ever and I am so tired. I wish I knew what was happening to me.

  • Thankyou everyone for your comments on PN . Have been to the doctors and he is trying to get me an appointment with a Neurologist at he hospital, no medication given yet. 

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