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Why is the pain so much worse at night?!!

Posted , 26 users are following.

Robo57
Robo57

I have been a Type II Diabetic for over ten years.  Three years ago I started getting sharp pains in my toes...  And then the condition has steadily worsened.  Both nerves for both feet are affected so I have pain on the soles of my feet and, much worsely - burning, shooting pain on my toes and tops of my feet.  I have learned that my doctor really doesn't know much about this horror but I think I have finally gotten her to appreciate just how terrible the pain can be.  I finally had to stop working because of the effects of long term insomnia and the pain.  And I am having problems with my employer accepting the disabilty claim.  It truly is a nightmare.  My problem is I can never get a good nights sleep. Every night is five hours or more of misery, until I conk out.  Anyway, I am always hopeful I will find something that other sufferers have found helps.  It seems we are really alone in this.  No one can believe the pain and the constancy of the pain.  I never get a day off!!!  I need to find a doctor that suffers from PN!!  That's the ticket!

Does anyone know why it is so bad at night?  I am so tired of hearing that there is no cure and there is nothing else we can do.  And I hate all the quackery out there.

3 likes, 27 replies

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  • katie159
    katie159 Robo57

    Posted

    Hi Robo57 I suffer similar and after 8 years i think i have diagnosed my problem.Will you please tell me if you think the pain is preventing you from sleeping OR do you think you have a sleep problem and you feel the pain is worse because it is nightime and things are always worse when you cant sleep.
    • Robo57
      Robo57 katie159

      Posted

      I am afraid it is nothing but pure increased pain, sometimes excrutiatingly so.  I have never had problems sleeping.  I seem only able to endure it until I conk out.  Even if therapies are giving me some relief during the day, nights are always way more pain.  It is baffling to me. As the condition has progressed the times where it is not so bad go away and now it is just the same, or worse.
    • katie159
      katie159 Robo57

      Posted

      You could always try a first generation anti histamine such as Benadryl, it should help with the pain plus give you a good nights sleep. All the best.
  • jane75220
    jane75220 Robo57

    Posted

    Sadly this condition is more problematic at night.

    A light throw rather than a duvet of heavy blanket helps to take the pressure off your legs.

    A nice hot bath or shower just before bed can help to ease the muscular aches and pains. Some people have epsom salt baths but others say it does not help.

    ​Manesium is often recommended as it is a muscle relaxant but has to be taken with the knowledge of your dr because if one suffers with kidney problems magnesium may be contraindicated.

    Some drs recommnd vitamin B12 either orally, sub lingually or by injection to help with the neurological signs and symptoms , in other words the peripheral neuropathic pain. The guidelines for this treatment can be easily googled.

    Have you seen a podiatrist? They can advise about diabetic footwear with supportive arches etc that are tailor made to take the strain off your leg muscles.

     

  • martin45332
    martin45332 Robo57

    Posted

    I have recently been diagnosed with small fibre neuropathy. I have tried to find as much info as possible. It seems here is no cure but it has to be treated as a chronic pain condition. What meds are you taking? I am taking 200mg of Tramulief, 1800 mg of Gabapentin and 1mg of clonazepam. Sometimes I also use Zapain which is a codeine and paracetamol mix. My worst time is around 9.30pm. I have recently read that methadone is helpful. I think the challenge is keep trying and find what is best for you. 
    • Robo57
      Robo57 martin45332

      Posted

      You are right, it is all about getting information.  I have come to learn that my doctor doesn't know much about this condition in the extreme like I have.  The joke about getting a doctor that has PN is actually a good idea.  I am going to try to find a neurologist that suffers from the condition, but that is a long shot.

      I am staggered by the dosages I see people taking of medications like gabapentin and its cousin pregablin (Lyrica).  I tried Lyrica but it had no effect at all but made me feel terrible and really made my vision blurry.  Cymbalta (duloxetine) gave some tiny relief that I only noticed when I stopped taking it.  At most I took 90 mg per day.  I have stopped that and now am taking Venlafaxine at 187.5 mg per day.  I have taken it for years for depression at 37.5 but I noticed when my doctor increased it for depression that I was seeing marginal improvement in the intensity of pain especially during the day.  I have to say that nothing is substantial for pain improvement.  It is insane at night.

      I eat two T3s twice a day in evening to take the edge off but that is all. Nothing really works.  The elephant in the corner of the room is opiates but that will surely be the end of me.  My doctor doesn't want to even consider it as this is life-long and we have to find another way.

      The only med we haven't tried is Amitriptyline and that is next.  I have no optimism for it but I will try.

      One thing I tell everyone about is to try wool or more properly - sheepskin.  I have gotten angora goat wool socks and they really do help the feet, somehow.  I believe it is the natural fibres.  I have big sheepskin 'pancake' slippers and they are a godsend.

      Good Luck.  I am glad I have found these patient forums.  A guy goes crazy because no one understands or empaths this pain, and how excrutiating it can be...

    • Didymus
      Didymus Robo57

      Posted

      I have found benefit from a product called Biofreeze (menthol) and Diabetic Aid [capsaicin 0.025%] are the active ingrediants. They are over the counter products
  • jonathon07789
    jonathon07789 Robo57

    Posted

    Hi there

    I am new to this forum and Ilive in London UK.  I am male and 72.  I developend NP after having a tumour removed from  my spinal can at L3-4 in 2010.  Since then I have real problems with pains in my feet, groin and some bits a numb (not as Pink Floyd "Confortably Numb"wink - keep a sense of humour.  So briefly, I have tired all the drugs mentioned here, lastly coming off Targenact (Oxycdon) after 4 years and then Duloxetone, STAYY AWAY FROM THEM ALL, they will kill you or make you zombified that you will have no life whatsoever.  Afraid there is no no magic wand with this condition, you just have to find your way through, I also am awake a lot at night, fortunately I'm not working now so I can take a nap during the day, which I do when required. I have found that the weather does seem to make a difference and living in a damp, poluted city like London does not help.  I go to a little mountain village in Cyrpus and when I'm there I do feel a lot better. Keep active as much as you can, get some real interests going in your life, it's the only way.  We won't die from this condition, but it will be with us, if anyone wishes to speak to me one to one about this, you can always call me up.  I can give you a phone number if that helps.

    With love to all.

    Jonathon

    • Shandon
      Shandon jonathon07789

      Posted

      I have bad neuropathic pain now and it's agony to walk. On the pregabalin and trying some tramadol now. The strange thing is it does vary for no apparent reason. Booked in for a pain clinic in early December.

    • Darcey
      Darcey jonathon07789

      Posted

      Hello Jonathon. I too have PN and live in Staffordshire. I am the same age as you but desperately trying to find the cause of my nerve damage. You seem to be very calm and accepting of this horrible condition and I wondered how you managed to avoid the depression and feelings of loss that Have affected me since this nightmare began a year ago.

      kindest regards,

      sandra

    • ann35640
      ann35640 Darcey

      Posted

      Hi there - don't know if you have read my post of a couple of months ago regarding PN. I don't know if you know the reason for your condition and what tests you have had. Are you diabetic? The reason for my neuropathy is unknown. I have recently been to Oxford to take part in a research project into potential treatments and also cause but they admit they are a very very long way off solving the problem. My advice is to just keep yourself as busy as possible and shake off the downtimes. I find taking sleeping tablets is a much better approach to dealing with night pain than taking any of the regular recommended medications which all have bad side effects. The stats for positive relief for these meds are something like 1 in 7 may get something like 30% relief (1 in 8 with a smartie!). I cannot believe that these figures can be anywhere near accurate as the drugs take probably three months to build up to a meaningful dose by which time no one would be able to accurately pinpoint their previous pain score.  The pain consultant I see recommends lidocaine infusion but I have yet to try it as I feel if it doesn't work I will feel I have nothing left in reserve if the pain gets even worse - which it has over the last six mons or so.

      i have tried all the other remedies suggested on the net but honestly feel they are a waste of money.  Get to a neurologist and insist on having all the  tests you can to exclude any obvious cause but my feeling is that research into neurology has a long way to go.

      would love to hear from any of you out there suffering with PN.

      Here's hoping for some answers in 2018

      Ann

    • patricia48825
      patricia48825 ann35640

      Posted

      I have terrible burning pain at night mostly. Can occur in day and evenings too.  Much worse when weather cold so living on Mendip Hills in Somerset is challenging. Have had this for 9 years now since bleed from Cavernoma next to brain stem (inoperable)  MRI also showed developmental venous anomaly and loads of white matter lesions. Lumbar puncture was oligoclonal banding positive. My other problem is severe fatigue. I will not take horrid drugs from consultant - gabapentin, amitriptyline, pregabalin. I am trying to trace cannabis oil. I wonder if anyone has sourced a good oil? Also I don’t understand why my GP won’t give me sleeping tablets so that I can sleep through the pain and not spend every night pacing the floors.

  • kendrick31
    kendrick31 Robo57

    Posted

    I was recently diagnosed with type 2 and I am experiencing the same problem as you robo57. I'm 36 years old I don't have a official Dr yet so I'm taking over the counter pain meds and they don't do anything. Im also taking gabapentin 300 mg twice a day but at night my pain makes my cry and not sleep I get about 2 to 3 hours a night. My question is when I get my official Dr. What should I say or ask about the neuropathy pain.

  • Brazenhawk
    Brazenhawk Robo57

    Posted

    Hi Robo,

    Please read my new post regarding milk thistle.  I am type 1 for 38+ years and fully understand your pain.  Milk Thistle has literally cured my pains (all forms in feet and my hand tremors from neuropathy in my hands that began a few years ago.

    Take a look, it has been medically proven in some cases (I got my info from the Mayo Clinic site).

    Hope this helps.

    • Robo57
      Robo57 Brazenhawk

      Posted

      You just made me remember something my long departed brother said one day a long time ago. He would buy milk-thistle supplement pills when he had extra money.  He claimed they helped his foot pain!  I had no health issues in those days and never thought of it again.  Both my father and brother had problems with their feet but they both died young and I never spoke to them about it.  I will get some tomorrow.  And start reading about milk-thistle.  Thanks!
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