Can’t Handle The Pain
AnonymousAugust 7, 2008 at 7:51 pm
Hi Everyone I Have Not Posted In A Long Time. . I Love Reading Everyone Else’s Posts Because I Know I Am Notalone. I Have A Problem. I Work 40 -65 Hours A Week, I Hurt So Bad By The End Of The Day I Cry All Night I Take All Medication At Night So I Won’t Be Fuzzy During The Day. How Do You All Get Through The Days That You Hink You Just Can’t Do It Anymore. Tonight My Legs And Feet Hurt So Bad And I Am Falling Again, I Also Have Reflex Sympathetic Dystrophy, From A Bad Central Line. Most Of The Time I Don’t Want To Get Out Of Bed For Fear Of Falling And Hurting More, How Do You Make It Through Life. I Guess The More I Hurt The More Depressed I Get. Any Encouraging Thoughts.
August 7, 2008 at 8:12 pm
First I would like to say hello!!! Do you have gbs or cidp? I have neither, it is my 11y/o son that is afflicted w/cidp. That being said I would be tired working that hard and I am not sick. You sound like a VERY hard worker, is there any possibility you could cut back a little? Many on the site take Lyrica, my father in-law does as well. For the first couple of weeks he was a little sleepy and forgetful, but then resumed normal behaviors. It helped tremendously with his pain. Hope you are feeling better this weekend, try to lay in the sun and relax!
Dawn Kevies mom
AnonymousAugust 7, 2008 at 9:40 pm
If Gene were still with us, he would tell you that if you don’t “recover” in 12 ~ 18 hrs., after an activity, you are doing to much. Are you on any pain med that is specifically for peripheral neuopathy? Most of us take either Neurontin or Lyrica.
Many of us have had to take an antidepressant to deal with the life change. That’s not a bad thing as we really don’t know what affect this disease has on our brain chemistry. Post Traumatic Stress Syndrome is very really with any life changing event.
You are really taxing your nervous system with such a huge work week. Remember that the healthy nerves have to do the job of the injured nerves until they heal more so you need lots of “rest” and “self care”. I wish you well. Hugs to you.
AnonymousAugust 8, 2008 at 2:44 am
I am this way at night. I barely sleep with mine. Here it is 2:30 in the morning and I am posting. LOL! I ge bad nerve pain and joint pain. Terrible pain. So I truelyfeel for you. We are still trying to find the right anti depressant for me without bad side effects. Lyrica does not help. Cymbalta does not help. Effexor does nothing and now they are going to try me on buspar. Hope that helps. I feel your pain!
AnonymousAugust 8, 2008 at 10:31 am
Hi Huntti: I obviously don’t know what your situation is and whether you have to work that much, but in essence your body is telling you you are abusing it. If you work so much and take so little meds it is no wonder that you have so much pain. GBS/CIDP presents us with difficult choices we all must face, but you will have to change your lifestyle to bring the pain under control-the best solution is to rest much more. I have chronic pain and am on several pain meds but even with them I must rest a great deal to control the pain. We are all different of course but a formula that works for us all is that rest reduces pain and fatigue. Jeff
AnonymousAugust 8, 2008 at 11:07 am
I want to concur that you may be overdoing it. The more we tax our nerves, the more pain we have…I can personally attest to that. I push myself, even now that I know better and I pay the price.
Yesterday is a perfect example. I did chores in the morning (we farm), ran to town for parts, checked cows, checked bales and then baled hay for 8 hours non stop, but with a lot of getting in and out of the tractor. The buzzing and tingling was really bad last night and this morning I could hardly walk. The pain in my feet and legs was excrutiating. The buzzing and tingling are still there so I know I have over done it. I am taking the am off and not going out till this afternoon so that I don’t really do myself some harm! The key with GBS is to learn moderation….tough for all of us, myself included!
AnonymousAugust 8, 2008 at 2:07 pm
I got GBS in Feb 2000, I have tried Neurontin and Lyrica, neither works I am on Depacote, Clonidine and get shots of nubain for pain some saturdays. and have tried acupunture . nothing helps. Maybe I am over doing it. Thanks for the feedback
Tonya GBS 2000
August 8, 2008 at 6:02 pm
I am so sorry for your pain. I hope you find relief soon. About the neurotnin, a great man who has since passed (Gene) always used to tell people you could take up to 3600mg of neurotnin daily. How much were you taking? Good luck to you,
Dawn Kevies mom
AnonymousAugust 8, 2008 at 9:25 pm
Unfortunately, I do work like you and just limped up to my office after a long day of working, so I sympathize very much with the pain at the end of the day. Most days, I try to limit how much I walk, but Fridays are my busiest days. What are you taking for pain? It may be that you need to adjust these medications or alter them. I think, perhaps harder to do, you need to adjust or alter your life a little to try to do less so that you do not feel pain all night which just leads to accumulation through the rest of the week and makes you feel like it is intolerable. Are there ways at work to decrease the amount of walking or physical activity? I got a scooter to help. I also use a walker with a seat if I have to carry anything so that it saves me the energy of carrying. If not a walker, a rolling backpack will do. Another alternative is a cart of some type that you could move that has almost all that you need in the day as a rolling desk or rolling workstation so that you do not have to run around getting things. On your file, you say you are a surgical technician, so I know that such carts exist and might be a good innovation for the place you work to save everyone time, but especially for you to save energy. I wear a pedometer to help me keep track of how much I have done in a day and also to help gage times of improvement. I used to could walk 1250 steps a day without feeling terrible. Now I can walk about 2500 steps without feeling terrible (about a mile). Today, I walked about 3000 steps and I am sorry. I wear the pedometer because if I need to do something for someone, I will do it without thinking about the cost on me. This helps remind me that there is a pretty significant cost on me and that I can help control that.
Another thing I have found is that even an hour of “sit with your feet up time” in which I read or do paperwork, helps tremendously in the late afternoon or evening. I think the stillness/rest and the feet up are both important to help to defuse some of the accumulating discomfort so that I can finish the day. WithHope
AnonymousAugust 10, 2008 at 12:10 am
I haven’t posted for a while either, I have been trying to deal with the pain and all my work that I think I have to do.
I know you are overdoing it. Your nerves aren’t working like they use to and you need to do twice or more the work, just to do what you use to. As everyone has said you WILL have to cut back and let your body heal. You will over stress your body and collaspe. GBS is a heartbreaking disease and your body is telling you to slow down.
I over do all the time and have to take 2 days to recover. The last time scared me. I was doing a dinner/picnic and after many hours of fixing the day before and the day of, my mom said I turned white and I felt like my body left me. I couldn’t move but to fall on the couch, drink water and everyone was scared.
I was exhausted to empty. It took a week to recover and I would do a small part of a job and rest then another part and rest.
Heat attacks can start this way, I know mine felt heavy, very heavy.
I hope you listen to all of us and rework your life, it isn’t easy but REQUIRED.
Good Luck Huntti
AnonymousAugust 10, 2008 at 12:37 am
I just posted and I forgot to tell you that I got GBS in 2000 too.
I used many pain relievers and Lyrica and Neurotnin. The only thing that works for me is Vicodine ES, Cymbalta, and Fentynal( a patch you stick to your arm and change every other day.) We all have to find what helps and exercise to keep moving.
AnonymousAugust 10, 2008 at 10:39 am
Hi Tonya, Welcome Back!! You too Judy!!:)
Tonya, you are overdoing big time! You might want to rethink your limits, and only you know your limits. As Gene would say “Rest,Rest and Rest!!!” You can cause more damage by pushing your limits, and that can lead to a relapse. Pain is there for a reason, take the time to listen to your body, then do as your body allows. Pain drains the body of energy, if you can rest, allow your body to regain some energy, control the pain, you will be back on your feet enjoying life again. Setting limits, and staying within those limits is the hardest thing to accomplish, but it is very important to do. Take care.
AnonymousAugust 29, 2008 at 1:51 pm
Nates Neurologist referred Nate to the Pain Center in La Jolla, Ca which is about a 40 min drive and I don’t mind going down there.
The doctors there put Nate on Tramadol aka Ultram for pain besides his Neurontin he is already on and it seemed to help him a lot.
They told him he can take 1 or 2 during the day 4 times a day.
He is also taking Cymbalta now and it is helping him feel better.
There are a lot of meds out there but you have to keep asking for the help if one is not working. Don’t give up!
AnonymousAugust 29, 2008 at 10:34 pm
I guess I am lucky, ( knock on wood ), I don’t take anything but Advil for pain. I also have a pretty high tolerance, I guess. When something does really bother me I use heat like a hot shower, bath or hot water bottle. Also I massage the area. The tingling and buzzing sensations bother me more than the pain. I took Neurontin for six months about 4 years ago, but developed a reaction to it. My tongue felt thick. ( I know, it sounds weird. ) Anyway, I hope you find something for the pain. As everyone has said, rest is so important.
AnonymousAugust 30, 2008 at 2:49 am
Man, I don’t see how you work at all !!! I am not able to work at all and still have lots of pain and taking all the meds mentioned on here and then some. Why do you think I am up this time of the morning and checking this site out again. I go weeks at a time and am not able to get out of the house. Hey, count yourself lucky to just be able to walk. That is alot more than alot of us on here can do. I think you know what you need to do, and it was not choice for me, but to quite work. Talk at you later.
The Drummer Man……………
September 4, 2008 at 5:57 pm
You are overduing your self, I know it my self from my exspirent that if you work tomuch you get this pain and you dont know how to keep on. Im on gabertine and it take the edge of the pain I have in my feet and somtimes hands. But my doctor gave me sleeping pills so I sleep at least 4 hours at nights. before I got it I only sleept for 2 hours max, and worked as much as you and was trainging also. My hubby try to stay on time that I dont forget my self and over due my self. I run a candleworkshop and somtimes I forget time. Now I did put in my cellophone time to relax and eat, and do little walk or some exercise. I feel lot better with this. Evening and morning are worst part of it. Going to sleep with the cramps and the pain that makes my body go in waves, and going up in the morning feeling the pain when you put your feet down. But never give up, every day is new hope that things get little better.
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