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AUTONOMIC DYSFUNCTION

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theresa25769
theresa25769

I was diagnosed with autonomic dysfunction 4 years ago.

My symptoms are numerous. Severe pins and needles in limbs especially my legs. Severe stinging just as if i had rolled through a bed of nettles. Burning sensation in legs. The top of my skull feels as if i have a circular plate inside it and the burning stinging and pain is absolutely unbearable. I have a permanent feeling of  having a full face crash helmet on my head. Pressure inside my head and over my face is very severe. I can swallow food and fluid but when the food reaches the area of my breastbone it sticks there and will not go down. I have permanent pain in my upper right back which radiates across my back then round  to my abdomen. Including my head the left side of my body can feel freezing cold while the right side is red hot. I have very severe hyperhidrosis, hypothermia and hyperthermia. My stomach and bowels are also affected. I cannot walk in a straight line. I have a hiatus hernia, dilated bile duct, part of my pancreas has died, also diverticular disease. Chest pain and palpitations

can be so frightening. My eyes are affected especially the right one which looks half closed compared to the left one. Medication i have been put on is gabapentin and morphine. Other medication, cymbalta which made my symptoms worse, so bad i was bedded for over a week. I thought i was going to have a heart attach. Neurologist tried me on topomax but they also made my symptoms worse. I could go on and on with other symptoms but i think i have put enough down.

IS THERE ANYONE ELSE THAT FEELS THIS WAY.

1 like, 11 replies

11 Replies

  • Rob1976
    Rob1976 theresa25769

    Posted

    Hi Theresa, yes I put my story& symptoms on the discussion board a few months ago, I've had autonomic dysfunction for 6 yrs, tried all medications on market including quetenza patches & lidocaine patches( quentenza is very painfull & done under local anestetic ) lidocaine gave me rash, the meds either don't work & have too many side effects. I think u worse off than me as my eyes are fine, I get most of your other symptoms though, I'm attending a pain management program as from next week for 8 weeks
    • theresa25769
      theresa25769 Rob1976

      Posted

      Hello rob. I'm sorry to hear about your illness. I know exactly what you are going through especially if you cannot get any help. If you dont mind me asking was it a local or london neurologist that diagnosed your condition. Take care of yourself. Theresa.
  • Rob1976
    Rob1976 theresa25769

    Posted

    Hi Theresa, thank you, it was first at the royal free hospital in London that I was diagnosed in 2008, but then referred to the Chelsea & west minster hospital in London... 2009
    • theresa25769
      theresa25769 Rob1976

      Posted

      Thank you for your reply Rob. My local neurologist diagnosed mine then he referred me to The National Hospital for Neurology and Neurosurgery Queen Square London. (UCLH.) I was in there for 3 days but was not impressed by the very little they done. There are numerous tests for this disease but they only done 2. I think i would have got better treatment if i had have been holding my head in my hands crying. Anyway, i would dearly love to talk to someone who has the same disease as myself but i just have'nt found a way to do this. Its obviously up to you if you would want to do it or not. I could contact Alan Osborne who works in patient.info Administration and give him my phone nos. to pass on to you privately,  and if you agreed you could give me a call, but as i said previously if you dont want to i will understand. Please let me know (either way) what you think. Take care of yourself. Theresa.

    • Rob1976
      Rob1976 theresa25769

      Posted

      Hi Theresa, sorry I've just seen a message sent a while ago asking for my number..... Your welcome to contact me, if Alan can do that, I will give you a call
    • theresa25769
      theresa25769 Rob1976

      Posted

      Hello Rob, I know it has been a long time. You said you would'nt mind me contacting you but I don't know how to go about that. You mentioned "Alan," but I don't know how to contact him. If you know how to contact Alan and explain to him why, you are free to have my contact no. I do not know anyone with the same illness that I have and it would be really uplifting to talk to someone who knows what I am gong through. I hope you are as well as can be expected and I hope to hear from you soon.Take care Theresa.
    • Rob1976
      Rob1976 theresa25769

      Posted

      Hi Theresa, yes it has been a long time, a difficult year,  i dont often go on here, in your 2nd email a year ago you mentioned a Alan Osborne who works in patient.info... I will have to try see if I can get hold of him again as I think i did try email someone at the time but I never got a response. Strange enough one of my friends down south has the same illness, but not as bad as we do... Hope you are as well as can be expected too, I was also diagnosed with a cognitive brain impairment 2 years ago, (not to scare anyone but apparently the nerve disease did that & can lead to dimensia which I have first signs of!) & for the record, the pain management program did more damage cause of all the execises the physio tries to make one do..... I've damaged my back  & as a result my nerve disease has spread to my lower back over a year ago....  
  • CLACHER
    CLACHER theresa25769

    Posted

    I am SO sorry to read of your dreadful symptoms. Although we have the same condition I have different problems . I tried gabapentin but after 3 weeks i felt very angry ( not like myself at all). My neurologist suggested pregabalin and in a low dose 25mgs which I think helps!! It is hard when we have 7 or 8 things wrong. I also have osteoporosis and osteoarthritis and to cap it all .... A pituitary tumour. My mother's mantra was KEEP GOING KEEP GOING. But it is hard. I send you a hug. X
  • Twitchy1963
    Twitchy1963 theresa25769

    Posted

    Hi Theresa - I'm new on this forum. I have Rheumatoid Arthritis, Hypothyroidism and advanced small fiber sensory neuropathy which gives me burning nettle type of pain in hands and feet and legs and arms almost constantly but is worse at night. I'm being investigated by a neurologist in a few weeks time to see whether this is immune mediated or idiopathic. As I have recognised autoimmunity I am hoping this helps them narrow it down a bit but so far I've had to stop three RA drugs and Amitriptyline and Gaberpentin because of severe adverse reactions. I'm currently taking the lowest dose of Duloxetine/ Cymbalta and have tolerated it okay for six weeks but I have found that it has made my mouth dryer and my eyes too and also is making me clench my jaw badly and gives me insomnia when I try and raise the dosage. We are all different in the way we respond to drugs but one thing we have in common it seems is this awful neuropathy.

    I find I no longer sweat at all or else I have dramatic and innappropriate sweats suddenly - my feet freeze and burn simultaneously and change colour as my toes go white. I have lost sensation in my feet and hands and private parts (V!) and I can't taste food or smell things much anymore. On the plus side my RA symptoms have gone into hiding for the time being but I would exchange them for the constant nerve pain anyday!

  • Tumtum1963
    Tumtum1963 theresa25769

    Posted

    Hi Theresa - sorry you have so much to contend with. I have a diagnosis of RA but also am undergoing tests for peripheral neuropathy - most probably a small fiber neuropathy which is always present but one says it flares so that the burn and tingle and shooting pains in random parts is severe. I have lost some sensation in my hands and feet and all four limbs have a burn chill nettle patch effect, especially at night. Mine started four or five years ago and I sweat very little, have lost sense of taste and smell and have numb pelvic floor and in my face a little too now. My eyes are very dry and my mouth is increasingly dry too - as is my nose.

    I have had horrible reactions to many drugs

    So am currently just on the lowest dose of Cymbalta. I will have an MRI and lumbar puncture at the end of this week but my neurologist and rheumatologist suspect it will just be part of my connective tissue disease or idiopathic.

    Have you tried any immune suppressant drugs yet or Hydroxichloraquine?

  • simone15718
    simone15718 theresa25769

    Posted

    Hi Theresa, I can totally relste to you awful symptoms. I was diagnosed in 1996 with HNPP this condition causes a majority of the symptoms you described. i get headaches Pins and needles/ numbness, brain fog, severe back and leg pain. Feet freezinh, then burning, I am on 30mg of slow rease oxycontin twice a day 1200mg of gabapentin three times s day. Omeprazole, paracetamol. Diazepam, propranol and oramorph. I also suffer from diverticula disease, s sliding hiatus hernia which has meant I struggle to swallow food or drink. I also get chronic fatigue. I have tried physio numerous times but as someone else posted they push too hard and you do more damage. I have also tried s caudal epidural in the spine for pain. I find my condition very frusrating and isolating

    I am on a very supportivr group for those of you who have Facebook it's called

    HNPP/CMT/ NEUROPATHY SUPPORT I find it useful as everyone on there can relate to each others symptoms. Hoping you are as well as can be expected kind regards Simonr

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