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

Posted , 26 users are following.

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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  • Posted

    Hi Robo,

    I found this by sheer accident myself some 10+ months ago now.  My big sis had told me to take it to help clear my liver from the Lyrica fiasco, which had horrid side effects on me.  But in literally only about 6 days ALL my foot neurpathy pains were GONE!  

    I take milk thistle now 3 times per day at 175 mg capsules and continue to have ZERO pain in any of its forms (I had them all).  It has also stopped my neuropathy hand tremors as well.  And I have noticed a good effect on my blood sugars.

    Again, I am no doctor, however I am extremely well versed in diabetes, being a type 1 now for more than 38+ years and some 29,000+ injections just to stay alive. I am blessed with the only major complication being neuropathy (which I have found there are many types).

    The only thing you may want to check on is any possible allergy to milk thistle, since it is a "weed".  Other than that, it has a ton of upside potentials in many forms.

    Everyone's bodies can be very different and you may or may not get the same results.  However, this is a NATURAL method and the chances of doing a lot of good in many areas, not just neuropathy, is strong and worth a shot at only about $9/month.

    I sure hope it helps!  :-)

  • Posted

    Don't take Benadryl except for very severe allergic reactions. It has been implicated in risk factors for dementia. There are other meds as well. I would look up the studies on Google Scholar. 

  • Posted

    Folks, if you need quick relief, these things have helped me:

    a lotion made of about 6 oz. of COCOA BUTTER LOTION (no substitutes, but it's cheap so don't worry) mixed with the contents of six 600 mg capsules of the amino acid Alpha Lipoic Acid and shaken well. Alpha Lipoic Acid (ALA) is like a vitamin, you will find it in the vitamin section of the store. Shake well and apply as needed for pain. (A doctor told me about that one and it seems to work well for me. I also take 600 mg of ALA 2xday at his suggestion.)

    Since you can't always take off your shoes when your feet hurt, I had to find something else I could do. Hypericum Perforatum is a homeopathic remedy-pretty cheap too-that seems to work as well.

    I have also found that eating cucumber seems to help, but it takes a bit longer.

    Since I seem to have these worse right after eating, I have found if I take about 3000 mg of vitamin c with the alpha lipoic acid and Berberine before meals, I don't seem to get as much pain-sometimes barely any.

    Hope these things help some others as they have helped me. Brazenhawk here on the boards said taking 175 mg of milk thistle 3xday helped to eventually get rid of neuropathy altogether, so I plan to try that, but in the meantime gotta have something to help with the pain, so I will keep using these!

  • Posted

    Am lying here in bed with legs and feet on fire trying to keep the bedclothes off me but even when I do the pain does not go away it is just different.  I have idiopathic sensory peripheral neuropathy - which basically means they have no clue what is causing it but it is a possibility it is caused by glucose intolerance over the years.  I am not diabetic but the new definition of pre-diabetic is now a recognised condition.  I am lucky enough to see a well respected consultant at UCLH Queen Square so am certain they have got it right.  Skin biopsy finally proving I am not imagining things.  As you will all probably know it is very difficult to live with the constant irritation of the pain, freezing, stabbing and stiffness (to name but a few symptoms) which are constant.  I have tried all the available medications but they do nothing for me other than to confuse my head and make me feel very vulnerable - I no long take anything apart from Zopiclone each night to get to sleep.  I honestly feel that when I am unconscious it is the only time I feel normal - if that makes sense. I have been offered Lidocaine as an infusion by a pain clinic but am too frightened to have it done as it is accompanied by a warning of "may cause death" although my consultant assures me that has never happened.

    So where am I now?  I am investigating cannaboid products - there is a great deal of proof of some success with this and it is now legal in the U.K. but not widely known.  I recently met a young lady in Mozambique with a more severe form of neuropathy who uses it and seems to think it helps her.  I am going to partake in a clinical trial looking into gene related issues later in the year - something may come of that in the long term but probably too late for people of my age (67).

    i am sure all of you know that each day is a trial to be endured but there are small things you can do to help - I keep very busy - Pilates, tennis, art and toning.  Rarely sit down as that makes it worse - the pressure on the back of the legs. I must be hell to live with as I wriggle and move constantly.  I am lucky enough to travel a lot and do find that wearing shorts and Birkenstocks helps as there is very little touching my skin.  It is bad news getting cold or stressed as that seems to exagerate the symptoms.  All of this started about 8 years ago and has steadily worsened - sadly all my investigations lead me to believe there is absolutely no cure at present and taking the regularly prescribed drugs is not the route to take as they all have horrible side effects.  Better to try and distract yourself but at least have a clear head.  Like me you may find that your G.P knows less than you do about the condition and that you feel somewhat abandoned.  There have been times when it has been me telling the GP what drugs and doses I need but I have never been reviewed to see what is happening - you are on your own.  Take control - ask to see a pain clinic and push hard to get to a Nerological Centre of excellence - I do not think your local hospital will be of any use and will probably just prescribe lyrica or something in the NHS guidelines -( which you can easily find if you google it)

    i thought it might be good to chat with you all so any replies or thoughts would be appreciated.

     

  • Posted

    I too would like to know why this pain is worse at night.

    What I have recently found that helps in Salonpas patches (USA). Some patches have lidocain on them. Other, have a mixture of menthol, camphor, and wintergreen. Also, use a product called Biofreeze which is a roll on of menthol. Have you tried soaking in very warm water or standing in a warm shower. I am trying to figure out if sugar levels have any relationship to the intensity of the pain. Good luck

  • Posted

    I have genetic neuropathy and I to have more intense pain at night when I lay down.  I have found if I soak my feet at night before bed in ice water it tends to help so I get to sleep.  I have also lost all but two toes on my feet because i have gotten a few bouts of osteomylytis and had to have toes amputated.  I take Lyrica three times a day at 225mg each dose.  The Lyrica has been a God send for me as if without it I would be curled up in a fetal position without it.  During the day if I am busy with work and or up and around on my feet I tend to have very little pain.  It is not on my mind then.  Only other thing I have done that works at bed time to get rid of pain is to have about 4-6 shots of whiskey.  I can then get to sleep.  The booze may be bad for me but it cannot be as bad as Percoset which I use to use and I about bought the ticket back in 2009.  I also notice when there is low barometric pressure where I live it is worse.  If we have higher barometric pressure my feet do not bother me.  This has been driving me crazy for about 8-10 years now.  Both me an my brother both have it and neither of us are diabetic.  Anyone got a suggestion on what to do I would sure appreciate the help.  This is the first time I have written anything here.
  • Posted

    Thank you for your post . You describe my PN to a tee. I don't have much success with Lyrica.

  • Posted

    Hi Robo.  My husband also suffers terribly from peripheral neuropathy, especially at night.  He really hasn't slept well for the past four years.  The doctors we have had were always against prescribing any kind of benzo for sleep. In the last year our doctor had us see a specialist who works with drug addicts and prescribes an anti-psychotic called Quetiapine to help with sleeping. While it is an anti-psychotic, it is often prescribed for various illnesses to help with associated sleep disorders as inducing sleep is one of its side effects.  My husband is terrified of medications as he has multiple sensitivities (experiences terrible side effects to most meds) and was very cautious about trying this one. However, he finally relented and finally we have some relief.  while his pain is so severe it covers most of his body now, he still manages to get to sleep. pain still wakes him two or three times a night but he manages to get back to sleep. The medication does not appear to cause him any side effect.  I hope that this may help you.

    kindest regards, Leanne

  • Posted

    I recently was diagnosed with neuropathy and it is worse at night for myself as well, especially if I try to walk, I’ve been in a wheelchair for the past 5 years because of my  rheumatoid arthritis and it’s pretty severe and both my knees are bone on bone...to painful to walk at all now. The burning needle sensation is awful. I also suffer from  fibromyalgia so I know about nerve pain, can’t take lyrica tried it and it did not mix well with the cocktail of pills I take. I can hardly sleep, the worse is going 3 days without sleep because of the chronic pain, opioids helps a bit but not enough for me to fall asleep with the pain. I’ve been taking amitriptyline for over 25 years and it was fine until the neuropathy pain started, I now need a better anti depression for me to handle the pain better because I refuse to take stronger or more pain killers because it actually makes my insomnia worse and makes me hyper. My husband made me a foot cage, that’s what I call it, it’s to prevent the bedsheet from touching my feet, pressure from blankets is painful, that help me a lot. I think the next step for me would be medical marijuana but I want the oil that takes care of the pain but you don’t get high from it, which I hate cause I get very nauseated...

    if you find a solution to your  insomnia could you please let me know?

    just know you are not alone and that the pain is real.

  • Posted

    Hi I was diagnosed with this horrible thing last month everything that you have mentioned sounds exactly like me it's agony,I also feel like giving up work but I can't afford to,I don't know if you are on medication for it but I too could not sleep and my doctor gave me amitriptilene and they really do work for me to help me sleep,I also take duloxetine which my neurologist suggested which in time are meant to reverse it,I hope this is of some help to you and I sympathise,do you know what benefits you can get if you need to stop working x

  • Posted

    The only benefit I get is ODSP pay for my medication and other medical stuff but my husband works so I don’t qualify for more then that...sorry I wish I knew the amount and it took 7 years for them to even give me some help. 

    I pray you get better.

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