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Life with Pain

spunky21sspunky21 Posts: 161
edited 06/11/2012 - 8:27 AM in Chronic Pain
Since I rarely sleep at night, I take this time to read what others like me are doing to deal with their pain. My life has taken such a turn and I wonder if anyone feels the same.
I read the posts and it seems like so many are able to or push themselves to function at a much higher scale than myself.
I had an ACDF in March 08. Pain has returned only worse and affecting both sides not just the left. Low back pain L4, L5, S-1. Diabetic Neuropathy, Vocal cord paralysis, Burning pain from Neck to toes, migraines, extremely weak legs which cause me to fall down. Anyway I will get to my point.
My day consists of perhaps reading the posts on this wonderful site I have found. Getting coffee ready. Maybe folding towels after hubby does wash. Then basically sitting in my recliner with the shades pulled as the sunlight makes the migraines worse, trying to distract myself from the pain. I do try to walk around my house (lower lever) to keep blood clots from forming in my legs. I use a walker and a wheelchair. I don't go out unless I have a dr's appt. I don't go out to eat as I choke on my food and I drop virtually everything. I have tried a tens unit, aquatherapy to strenghen muscles, physical therapy, traction, injections and nothing seems to work. I cannot drive anymore and to go out even to the dr. makes my pain levels increase terribly. I used to love to take baths and relax. Now that has become a necessary chore which requires assistance. I guess I have been getting down on myself because I think I should be able to do more. I live in cotten pjs as clothes in general make the burning pain worse. Socks and shoes cause agony. I know I am sounding like a real whiner and I apologize for that. Does anyone else spend their days like I do? If so would you let me know. I do try but if I stand too long my legs give out. I feel like I am so unproductive. The surgeon says at this point he does not feel operating on lower back is warranted. I have nerve damage in left leg and foot. I have myelopathy which I noticed there is new discussion on this topic "great idea". Anyway I guess I just wondered if anyone else seems glued to their recliners. I also think accepting my disabilities must be a gradual thing one does. Perhaps I am in denial and I imagine many of you have faced this.
Well I am sorry for the long post. I have been thinking of posting this but I didn't want everyone to think I was lazy and could not handle pain. I used to have a very high pain threashold. I do see a PM dr. I take zoloft, percocet, lyrica (which I do not like side affects) and methodone. PM dr has discussed a spinal cord stimulator and pump.
Thanks for listening I guess I just needed to vent.
Have a good day all


  • Hi Jan, you certainly have your share of pain and difficulties.
    As has been discussed many times here it is almost impossible to get others to listen to your problems, and everyone has a need to rell their story.
    So forums like this are an excellent place for you to tell your story to people who can understand and listen.
    You are they are also anonymous so that takes away that problem of friends and family not wanting to get involved.
    Being able to tell your story valodates your situation, and also helps you to sort it out a bit in your mind.
    I'm not able to offer any advice on the pain front, but welcome to the forum.
    it helps to put things in perspective when you realise just how many people have similar problems.
  • Reading your story is like reading one from the magazines at the neurologist's office. The cool thing is that many of those have a happier outcome, several due to pain pumps or spinal cord stimulators.

    Have you made an appointment with your PM doc to specifically address either of those options? The pain pump would allow you to get away from the oral narcotics and eliminate the side effects that many suffer from those types of meds.

    I have read through many pain survival guide books and one of the things I love about them, is they all of them focus on helping the chronic pain sufferer find a way to make some sort of life for themselves. Finding a way to deal with and anticipate as much as possible, so that the individual and their family can take back control. It is acknowledged that the pain is and always will be there, but it also teaches that a person can regain some dignity and self worth and actually enjoy life once again.

    So please keep faith in the fact that there is a chance of working through this towards a better daily solution.

  • Hiya >:D< Firstly dont ever think you are a whiner because your not :T . Part of healing is exceptance :) , and i know how difficult this can be >:D< . Jan , you say most of the day you are in a recliner :S , have you tried to do some stretches :/ , like try and lift your legs (one at a time) up and down even if you have to use your PJ leg to do this :) , this will help get the blood flowing as well as strenthening you muscles O:) . Jan you dont push yourself to much you do only what you are able to =D> . Try 5 on each leg for a week I) , then the next week increase to 6 on each leg I) , but only if you can :) . Think of exercises you can do in a chair (|: , because this will help in the prevention of your muscles wasting :S . The burning pain you get is nerve pain :''( , i know that because i get it :''( . I know this isnt easy but do not let your illness stress you B) , because stress can increase pain :SS . Let me know how you get on >:D< , we are all here for you O:) . Keep posting and PM me anytime you need to :) . Just remember to do little exercise each day is better than none ;) , you never know you may surprise yourself of what you can do :)

    Angie O:)

  • Hi Jan,
    I want you to know that you are not alone, and you certainly aren't a whiner. This is one place where it's okay to talk about your pain, all of us here understand. I have cervical and lumbar issues too so I can relate to the head to toe pain. Dealing with all of this is the hardest thing I have ever had to do and boy to I get down sometimes. If I were you I would seriously discuss the options of a pain pump and spinal cord stimulator with your PM doctor. I had my permanent spinal cord stimulator implanted on Jan. 16, 09 and I love it. Keep your chin up Jan, things will work out. Whatever you do, don't give up on looking for the pain relief you deserve.
  • Thanks for all your understanding posts. I truly love my support group you are all great.
    I have been making an effort to do a daily regiman of legs movements even if they are from my chair. I had a nurse from my ins co call and give me exercises I could do sitting here to keep the blood flowing.
    As for the spinal cord stimular and pump, I have a referral to see a specialist for a consult but I have a new insurance with a very high deductible so I am waiting for this. I have been approved for SSDI but have to wait until May 2010 for Medicare to kick in. I am reading up on the stimulators and my PM dr does feel this may be helpful for me. I do feel better after reading your posts. I guess I was having a pity party or maybe I was being hard on myself. It is so hard to accept my limitations as I was such an active person. I imagine it takes a lot of time for one to actually realize what they cannot do any longer. I tell myself often there are so many in worse shape than I. Again thank you for your concerns and posts you are all great!
  • i read your post and i could have written it .with a few tiny adjustments {i am male} .i am just like you operation pain recliner pills!! no sleep etc its crap its it!!,i too am very disappointed .thinking that this operation would make me better .but is has only made me worse .this is my second operation.i am due another MRI on the 12 of Feb.to find out why i am in so much pain .like you even standing is hell i started swimming last month but i have had to abandon it due to the amount of pain it was putting me through.so i sit in my recliner and pop pills 24/7 !! i have tried everything but nothing works even my pain doc and my own family doc are scratching there heads wondering ...what now??..to help me they have seen me go from an energetic happy healthy man to a grumpy fat man racked with pain and i am only 42 ..than god i have a fantastic wife .
  • i forgot to mention that i can't have a spinal cord stimulator due to the congestion in my back..i use the acticare unit every day its a high end tens {hospital grade}
    like you sleeping is a no no due to pain .i manage 3 hours max then pain wakes me .we have an electrical adjustable bed but even that can't keep me asleep .i live in my recliner .i can drive but only under duress to go to the hospital/doctors/chemist! if you are up and wanting to talk .you can get me on tony.beer1@googlemail.com
    MSN /face book
    hope things improve
  • When I read your story, I felt silly complaining about my problems. You have to deal with so much on a daily basis and it amazes me how strong you are. And most certainly you are not a whiner. Many would have broken down a long time ago if they lived one day in your shoes. Your day sounds similar to mine. I see my family off early in the morning, and here I am all day taking my meds and trying to do something with myself. I feel ashamed that when everyone comes home, that I am in the same spot they left me in. I find myself apologizing because I feel like I'm the world's most unproductive person. The thing is that I'm going through one of my many pain flares right now and I am distracting myself by posting in these forums.
    Well, I hope you have a pain free day. Take care :)
  • Reading everyones posts I figured out something. Not only are we dealing with our chronic pain but it sounds like we are all trying to deal with the guilt that comes from having inactive lifestyles due to our limitations. I know one thing for sure--this is not our fault. I know we have I all tried so many different options, therapies, medications, surgeries (many of which have made us in more pain than when we started).
    Someone in my family actually said to someone else that I was sitting here doing nothing about my illness because I would not try a chiropractor. I felt just awful and cried my eyes out. Deep down I think I am doing and have done as much as I possibly can to get to the root of my problems. When the doctors and believe me I'm sure we have all had many dr opinions have said we are going to be in pain the rest of our lives its not that I am giving up its just that I am trying to be realistic about my condition. For the time being I will continue with my home therapy, prayer and distraction. At least I have all my friends here who completely understand. I believe we can have fulfilling lives just in different ways than others. Maybe just be contented with the hand we have been dealt will help with the emotional end of this pain we live in.
  • Part of healing and coping is acceptance. We all have our down days thats ok (we are allowed to) because we have had to deal with such alot that comes with this type of illness. Wishing you all to be pain free.

    Angie >:D<
  • I too am new to this site. I have found it to be most interesting.
    Don't feel bad about "whining", I think all of us that suffers with chronic pain has to have themselves a little "pity party" once in a while. Sometimes when life has really got you down you have to get really mad and just say to yourself that things WILL get better! We are lucky to live in this day and age where so many diverse treatments are available to us. You need to keep searching till you find a caring/compassionate doctor who is willing to explore all options with you. I am currently on such a quest. It sounds as though you have a very understanding husband (I do too, thank God)! I'm sure he does not mind if you stay in your jammies. You do what makes you feel better. I was a type A+ before my back problems started. I am a people person and I miss interacting with my friends from work. If not for internet and my DVR, I would go crazy! I do find if I can work on my crafts, I feel better. I do needlepoint/quilting and sketch. All of these things you can do from your chair. Keep the faith and know your situation will improve! I will keep you in my thoughts and prayer :)))
  • I like you never go anywhere. I don't get dressed and just stay in my pjs all day. But in the summer I forced myself to go out 15 minutes a day on the porch. If I was feeling well I would take a short walk with my cane. I bought a pair of sketchers runners that you just slip on with no laces and they're way better than any I've tried. My husband bought 2 birdfeeds so I can look at birds as a little hobby and we've taken in a stray cat who was exposed to a crackhouse rented down the street and they never took the cat with them when they moved. So he's a welcome little critter even though I said I'd never get a pet. Try to find a hobby for yourself or little goals like cleaning your cupboard one drawer at a time. Nice to meet you and take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I thank the Potter for making these clay. That is how I cope at time with pain. also the moment I feel no pain I get on the phone to my mom and my sis. Since they all share my pain, I also include them in my moment of joy. and then the pain is here again. but I just made two people happy. So all that have posted here. thanks for your support to each other.
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