Insomnia and Legs feel like they are turning to stone

Posted , 9 users are following.

I have this severe pain in my legs, its always starts at night.  I have an expensive Sterns N Foster Sleep Bed and it doesnt help.  I invert my legs, curl up in a ball, its just so so bad.  My General Dr. doesnt get it, He put me on Gabapetin but it like a bandaid on something that needs a thousands stiches.  Im in severe pain, only sleeping every other night and that because of the exhaustion.  I lay awake writhing in my bed moving from room to room , bed to bed trying to not wake everyone in the house.  I have tried So many things, tintures, B12, Pain sprays from a chiropractor, Tramadol which wakes me up more and requires at least 2 to even begin to touch the pain, combined with Gabapentin. 

To describe it, it feels like the insides of my legs are turning to stone, they feel heavy, painful.  Im not overweight either.  I get up and shake my legs which gives some relief.  It feels like my nerve ending are outside my legs, everything hurts.  Eventually it takes a toll on my heart, my physical body everywhere and my mood.

I was told its Neropathy, no DUH!  I just want a solution.  There are nights you just wish you could dismantle your legs to stop the pain but thats really just me venting my pain.  I love my long legs but I wish I knew what would end this pain and suffering.

Can anyone relate?  What have you tried.  Im just a girl in Florida who needs some relief.  Wow this is chronic and ridiculous and why or what brought this on!!!!

2 likes, 28 replies

28 Replies

Next
  • Posted

    i kind of suffer from the same thing some of the time.  i just read an article that if you drink 2 glasses of water before bedtime this helps.  i tried it the other night and had no problem.
  • Posted

    Thanks Cheri29129

    I will give it a try.  i do drink lots of water and keep Auquafina by my bed drinking several volumes a night.  smile

  • Posted

    Hi Sherry. That's such a great description of intense neuropathic pain. I love words but never know which ones to use so thank-you.

    However I'm really sorry that you are going through the mill. I have come out the other side with my small fibre neuropathy now and the pain has almost lifted but has been replaced by numbness - which feels comparatively blissful apart from the way it's affecting my balance/ equilibrium.

    I never found a type of pain relief that worked for me - in fact Gaberpentin and Cymbalta both made me very ill and were hellish to get off.

    But steroids and antiinflammatories were the best. They really helped but unfortnately I couldn't stay on them for other reasons. What this showed me was that the cause of the terrible stone pain was inflammatory in nature and was triggered by my defective immune system. I know this because I had rheumatoid arthritis for three years and the neuropathy started shortly before this disease. Also I have inflammation in my blood which is still there long after the joint pain and swelling has eased.

    I had a lumber puncture over a year ago which showed there is an inflammatory process occurring in my system. My rheumatologist won't properly take this on board as his responsibility to treat and the neurologist bats it back to rheumatology. I found not knowing the cause the worst thing but now that I've worked out that it's been triggered by an underlying inflammatory process I feel better able to manage it myself by researching foods that have anti inflammatory properties and telling myself that the pain is a blanket and I must let it swaddle me until I eventually fall asleep.

    I think for me it was the uncertainty that was most unbearable so perhaps if you can research and get to the bottom of yours too then the pain will seem less unbearable and lonely. Mine affects my hands and mouth too now and this does get me down a lot - especially when doctors imply it's all in my mind. I don't put up with this though because I know my blood shows high levels of inflammation.

    The reason it is worse at night is because the brain sends and receives signals through our tendons and we need our extremities for fight of flight. So when the tendons are still the signals from our brain to our nerves transmits more easily. I don't know if I've expressed this very well but it made a lot of sense to me and gave me comfort during the night when someone on a neuro forum explained. Research research research is all I can offer by way of pain relief.

    • Posted

      Thanks for responding Tumtum1963.  Your response does help me alot.  Understanding is powerful and causes me to be more at ease instead of the unknown underlying causes.  I will get to the bottom of this root and hoepfully find a proper root killer or at least pain reliever that works.  Your right the Drs. tend to imply it is in the mind or that your explaining is embelished because they have not experienced pain like this.  I wouldnt know how to relate if I had not suffered it myself.  I also suffer from Migraines, lovely little combination somedays!  I am determined to live a good life and enjoy the bliss of being alive in spite of all this pain.  It really helps knowing there are caring and intelligent people out there doing research and willing to pass along their wisdom to me.  Thank you for taking the time to respond to me.  Another day has come to a close, and here I am again ready to battle the night.  Nice to know there are others out there willing to help a fellow Neropathy warrior out.
    • Posted

      You are most welcome Sherry. I don't often respond on here but your plea moved me to action. There are many others who suffer from the same pain but finding an underlying cause for it has been essential for me even if doctors haven't been able to offer me any modifying drugs that I've tolerated. I'm presently looking into whether I might have Coeliac's Disease - hoping I do because that would explain so much and make the neuropathy something I could tackle by myself. Best of luck and here's a quote to help keep you focussed:

      "All truths are easy to understand once they are discovered; the point is to discover them."

      Galileo Galilei

    • Posted

      Bravo, thank you a wonderful quote.  I dont often actually, I have never written on a forum so its a first.  I will keep the discovery going because I need to find the cure and fight the good fight like a strong warrior. 
  • Posted

    Does anyone have a cure for INSOMNIA or these Restless painful legs!!  Who can work with something like this, its keeps you up all night!
  • Posted

    Hey Sherry, I cringe all over when I hear of someone else suffering with this misery that only people that experience it, understand it.

    I'm not sure how yours started, but basically one morning I woke up and my life changed and it seems that it may never be the same.

    I can't explain the discomfort and pain to anyone that hasn't experienced this seemingly ever changing pain. They always tell me that it's probably just stress and nerves.

    I have always been an outdoor enthusiasts and very physically active person. I am retired from the fire service with 30 years and thank goodness this didn't happen to me until 5 years after retirement.

    It really scares me to think of possibly getting to the point that I'm completely immobile.

    Quality of life is so important!!.

    My problems started out in my feet and hands and since has moved into my forearms and my calf muscles.

    After I realized this is one of those things that doesn't just go away after a round of antibiotics, I started to become depressed and just started getting up and setting endlessly on the sofa.

    Believe me, 3 months of that will take it's toll on you fast. My muscles started to Athrophy, and my entire body started to ache while moving.

    Finally a couple weeks ago I decided to fight back and started walking again. Back in early December when this hit me, I thought if I exercised and walked, it would improve, but walking killed my feet after walking, so I stopped.

    So far this time the walking tires me out but my feet doesn't hurt as bad as they did. I have found that activity, even though it hurts, it hurts less than when I set all day.

    Do you experience muscle twitching after you have been on your feet for a period of time?

    I like you and many others dread the nightime, because I'm all over the bed.

    I have found that stress is at least a factor when I'm in heavy traffic and my entire body responds by feeling like pins and needles and light electric shock feeling, once I'm through the traffic, it eases up.

    I recently traveled from San Antonio to East Tennessee, about 15 hours, and for three days after I hurt all over.

    I did try 6 weeks with a Chiropractor and it seemed to help a little. From my waist down, he said I was very twisted and I have a pinched nerve in my lower spine and my C1 in my neck was badly misaligned.

    I was really hoping the Chiropractor would help me, and maybe my feet at least doesn't burn like they did, but still ache on the bottom and feel like pins and needles.

    I assume just finding the right combo to ease the pain and discomfort is the key. I truly never know from day to day what I'm going to face, pain wise.

    In my wildest dreams, I never thought I would come down with a Neurapathy problem.

    I have read a million articles and medical things about hundreds of diseases that all this could be. I have a few symptoms of many, but not all symptoms of any.

    I'm not sure if this is good or bad, but Other than the nerve pain, I have good energy and my appetite hasn't faltered at all.

    I would just give anything to feel normal once again, but something tells me, this may be with me until the end.

    I am very thankful for the 60 great years I've had on this earth, and hopefully we will all eventually put and end to this nightmare.

    I sure hope you find the remedy Sherry to make you comfortable again. Great health is Priceless!!!.

    Florida is an awesome state with some beautiful beaches. Nothing like the ocean. It has a soothing effect on me.

    Get well!!!

    • Posted

      Kenny thank you for sharing your story.  Im sorry for what your going through but you are a testiment to keeping a positive outlook.  I am not retired and still travel to other countries often for my career,  so this is something new to me as it is to you.  Im so glad your staying active!  I go boating and walking, Florida is good for me, I moved here one year ago.  I had to leave the cold weather behind me..  Stress is indeed a factor and losing my brother to a tragic accident a year ago did seem to trigger all this, at least it began a few month prior to his departure.  Im not sure what hurts more, missing him or this painfullt mean attack on my body.  Well I will stick to health because thats the forum but Im sure glad to hear from caring people in this world and to know they are out there and Im not alone in this.  Yes I long for the day when this will come to an end and until then I will make the most of the days. 
    • Posted

      You have just described all my symptoms Kenny and I put up with them for seven years before getting a diagnosis. I would go through periods of being okay and tricked into believing I was over it before ‘bang’ it was back again.

      I had a brain MRI, nerve conduction studies, immunological serum screened and eventually an MRI of my entire spine which showed up 3 bulging discs. I was told that all of my symptoms weren’t typical of bulging discs and I was given aqua therapy and cortisone injections as well as Gabapentin.

      Nothing helped and I felt as though the doctors thought I was a fraud. When I was once again referred back to my neurologist, instead of my usual doctor, I saw a professor who was hugely interested in my symptoms. I was sent for something called a potassium voltage test and a MAG test (antibodies against myelin associated glycoprotein) and BINGO we got a diagnosis.

      I have a neuromyotonia (sometimes called Isaac syndrome) which is a peripheral motor neuron disorder, which isn’t curable but certainly treatable. I take Phenytoin and low dose of Amitriptyline which has made a huge difference to my life.

      Funnily enough, if I look up the classic symptoms of neuromyotonia, they aren’t typical of my symptoms and because its not a well documented disorder and my symptoms didn’t fit, I went a long time before a diagnosis.

      Think on, when they test you for something and come up with a negative, it just means they’ve eliminated something. They owe it to you to keep going until they find out what it is and if this means nagging them for an answer, then nag away…its your body, you have to live with it.

    • Posted

      Wow what a wealth of information JanSpencer.  This will help so many people.  I researching it myself now so thank you so MUCH
    • Posted

      Hey Jan, I really thank you for sharing your story. I am so glad you finally received a diagnosis. I think not knowing is very stressful and depressing.

      I never know from day to day what's going to happen. I have been again walking for a couple weeks now. I noticed the last few days that my feet doesn't seem to ache so bad, but I say that lightely, because it can snap right back.

      It seems now that if I stand for a while my lower back muscles become so tight, I can't hardly stand it. That comes and goes too.

      Now when I hear someone complaining about a sniffle or a belly ache, I just think that if they only knew. Chronic pain and discomfort is a life changer. It's like your worst dreams.

      I will continue on as long as possible. The occasional day or moment you feel some better, that gives you hope and keeps you going.

      When all this mess started, I had bad burning and tingling in my extremities, then that has subsided, then shooting pains and aches started, but That has improved, but know I have the extreme tightness in the lower back.

      It does seem that the walking has helped a little.

      Thanks again Jan!!!

  • Posted

    Hello Shery81017. I have started to have trouble with my legs. I enjoy taking my dog for walks, but a lot of the time my legs feel like lead. It hurts like crazy and takes everything in me to walk up are driveway. It started about six months ago. As Kenny said, I got up one day and my whole world changed. My feet would have shooting pains so bad that I would kick. It just took over. I had no control they would do what ever they wanted. Swelling gets so bad that shoes are not an option. Yet I can't walk without something on my feet because I have so much numbs I can't feel what I stepped on. Yet I have constant pain. I try to stay busy thinking if I am going to be in pain I might as well have a reason. Sometimes that is not one of my brightens ideas. Anyways back to my legs, I was hoping that the peripheral neuropathy wouldn't travel as so many have told me, but I beginning to think they don't know. I try to explain what is going on and I get looks like I am a nut or making all of it up. The pain and weight feeling are becoming more frequently, as you I get up trying not to wake the house up. If you hear of anything that would help please tell me. I have tried all the drugs the doctors want me to try. I have had back reactions to all of them do to other things going on with my body I have to watch what I take. I take demorol for pain four times a day and some days that doesn't stop the pain,but takes the edge off so I don't get quite as cranky. I so enjoy coming here so I don't feel so alone with this. Enjoy being able to see I am not crazy, it's the rest of the world, lol. Jmac
    • Posted

      You know, It really is a small world for us that suffer this.  Seems that in a day of such brillance there would be someone who could isolate a gene or dominant cause of this malady.  Wish I had ascience background would study it myself!  Yes it is often met with a look of disbelief from the medical society because it is such an unknown to them.  I think the more stress though as some have suggested the worse the pains.  I have taken recently to listenly to something called Wholetones, which may sound "Wierd" but it is based in scientific research as well.  It has provided me with much relief at night and settled me to a point of sleep for a while.  Michael Tyrell is the one who puts this music frequency out and it is based off HERTZ frequencies which the body reacts to sound.  It may help, drugs doent seem to do me much good and I hate the effects on my body but sometimes it is my go to when nothing else brings relief, I pop some Gabapetin and Tramadol but its much like an asprin.  I keep myself reading and listening to postive things, books, tapes, music, Im a singer Musician so music is a big release for me.  I hope Jmac2 and others this help you.  Again thanks for your response!  So glad to know we can help one another.
  • Posted

    I.Will try to find the music you have suggested. I listen to all sorts,mainly Christian music, but I am the type that will try anything that helps. I try to stay a away from all negative things and people. I can be my own downer at times. If you ever record your music please let me know, I would like to hear it. When you go through the same thing's another people's music can be up lifting do to them knowing you are going through the same thing.
    • Posted

      I don't know if you can trade email addresses so when you record music you could let me know if you are wanting to share. I honestly would be interested. I like new music. I can't find anything in terms about it or I have over looked it. Anyways you have a fan lol
    • Posted

      Well you will be glad to know, Michael is a friend and a believer.  His music is based on the original Key of David Music and Hertz frequencies.  smile  If you send me your email, I will then email you mine in a personal forum.
    • Posted

      Also a Lion Of Judah fan, and my music is Edification and Uplifting.
    • Posted

      I use to be on social media but left fb taking a  break.  Im on Twitter and Google Plus.  Willing to share under private forum as I dont want to put my name out there on this site.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.