advice for pain control

have you tried Neurontin? It works for many GBS’ers. I think the max dosage on Lyrica is 600 mg per day, maybe you just need a higher dosage. Hope you find what works for you. – John

Honestly less activity is the only thing that is truly effective for me. I have started neurontin 2 weeks ago and seems to take the edge off. Because of the sedation I take 100 mg at night only. But it seems to be less sedating this week. I also add tylenol. I have also tried an AFO(brace on my right foot) and this seems to allow me to not have to concentrate on lifting that foot and less effort through the day. Basically I have stopped all activity besides work and this I have limited to 6-8 hours a day and I always hurt by 2-3 pm. I come home and sit. It helps but what a way to live. My advise to you is rest and limit. I doubt neurontin is better than lyrica but it is all individual. If you are not responding to one you may try to switch. I just started with neurontin because it is cheaper. Dr. Shawn

I take 2400-3200 mg daily of Gabapentin ( generic brand of Neurontin). My neurologist said that he prefers that to Lyrica for its effectivness. I used to take Tramadol also, first with Tylenol in it, then I requested it without Tylenol as I didn’t want ot constantly take Tylenol. On really bad days, when I have to be active and can’t drag my legs around, I take a low dose Percocet, which does wonders; it is the only time when I am pain free and forget that I am sick. But of course, doctors become very worried about prescribing narcotics.

A friend, who has MS, also takes tramadol and Gabapentin. She finds some relief from the Tramadol, although I didn’t find it did much more than to take the edge off, but I do find a decent dosage of Gabapentin to be a valuable.

Laura

Cowtown Girl,

My pain med of choice is Vicodin. I know…………..controversial, because it is narcotic,…………..but, works for me now for 3 yrs., and my Neurologist still approves. It really works for me. But not for everyone, I know.
I also take Gabapentin (Neurontin) which is Specific for the “nerve pain”.
Mention this to your Dr. and see what he/she says.

Your Neighbor,
P

per,

the narcotic meds only worry me cuz they can constipate. a lot of the addiction, but not all, is in one’s head. glad vico works for you. take care. be well.

gene gbs 8-99
in numbers there is strength

How I suffered before neurontin! I missed a dose the other nite and what a miserable sleep 😮 I made up for it the next nite with neurontin and a low dose sleeping pill! Just remember that [U]all[/U] Rx have side effects. Neurontin seems to be well tolerated by most of us.

In addition to 2700 mgs of neurontin, rest and being in the wheelchair most of the time now, I have recently started oxycodone time release 10mg-for the first time in over two years I am 95% pain free. It is of course not for everyone as it is strong stuff but my pain management doctor says when it works it works very well and you can stay on it for many years without problem. I take it twice a day and have truly been painfree since I started it. It does constipate, but that is what citrucel is for. Like most have written, though, it is a matter of rest, knowing your body’s limits and pain meds. I think if I were not using the wheelchair I would still have pain even with the oxycodone as I was overdoing just by walking. Laura-good docs don’t mind prescribing narcotics for real pain-as my pain doctor said, why suffer if there is no need to. We all have enough to deal with without being in pain all the time. Jeff

It is reassuring to hear that a couple others also do well on a codeine-based medication. In the United Kingdom, you can purchase low dose codeine ( with an aspirin or Tylenol) over the counter – of course you can only purchase on box at a time so it is not misused, but it makes the difference for me between functioning on days that I would have to stay in bed and be depressed that I had wasted another of God’s beautiful days away.

I am going to bring a copy of some of these replies into my neurologist so he can see 🙂 that it is something worht trying when a person tolerates medicine well.

Laura

Sometimes it takes a couple of weeks, not just days, for a medication to work. At least that is what I was told and have read.

Once in a while I turn to vicodin or percocet (that one makes me sick but it helps) when tylenol or motrin arent helping. It is rare that I dont get relief from 800mg of motrin. I havent had neurontin or anything else for quite awhile now.

I have asked my pain doc to reduce my Pain Patch 100 mg and he sez don’t mess with what works. I also can have 6 Vicodin a day but after being correctly diagnosed with CIDP, having IVIG for over 2 years and now need maybe one pill per week. So the pain is tolerable till I overdo or it’s cold/rainy weather. These times I cringe and deal with it the best I can on my own.

Lyrica/Lamictal/the others didn’t work or made me very sick.

I wonder alot about the pain patch-the long term side effects.
I go to a wonderful website “Pain Foundation.org” that gives good advice.

Hi,

I am on a Fentynal Patch which is also narcotic and vicodine for break through pain. I also am on 120 mg of Cymbalta for an antidepressant and a pain blocker.

Before GBS, I was in a great deal of pain already. So GBS just made a bad thing worse. The Fentynal patch works great. Some days I don’t need any Vicodine. The neurontin really didn’t help and I just gained weight. I was given Vicodine and neurontin at the same time, so I cut out one.

I work with a pain clinic and my doctor has helped me with reducing my pain over time. The only other option is to have a Tens unit sugically put in my back. Not my cup of tea.

My friend also has a fentynal patch and he likes it too. He is in a wheel chair and not from GBS though.

Good Luck with your visit,
Judy

I’ve seen large Tens Units-about the size of a notebook. Talked to the man who was holding it and he said he really helped with muscle spasms. I’ve tried the regular size Tens Unit and after a week it didn’t work much. Of course no one knew I had CIDP.
I keep trying to get my pain doc to understand about CIDP. He knows my neuro and he himself is a rehab specialist.Pain docs are scared about their medical licenses now due to a few bad docs/patients. He started getting urine samples after I’d been going for 3 years. A nurse told me it was to see if “I” was actually taking the pain meds myself.
I’d rather be on nerve/pain blockers but they didn’t work for me. The stigma of the high amount of pain meds has caused two very ugly incidents in the local Emergency Room-they thought the worse.

I am so thankful for the days I can pick up my cat/sit in a restaurant/bring in a bag of groceries. I couldn’t do those before.

Hi fellow Texan,
Read your posts….I am so very sorry about your fall. I am going to see an orthopedic dr on Monday about my shoulder that I must have hurt a month ago after a fall….Oh joy more doctors.
Do you think you maybe having an allergic reaction to the new medication, even though you were on it before?
It may be eczema or seasonal allergies.
Think about the crazy Texas weather we have been experierencing this year. There is no telling what is growing and now floating around in the air. With all the rain there may be something new growing this year that is having an affect on you.
Might answer why your eyes are achey/red and your red rash. Allergies can also sap your energy.
My son has reactions to seasonal allergies. When anything different starts with him I go down the list. Seasonal pollen, food, chemical, dye in clothes, animal, etc.
Just some thoughts I am by no means an expert.
Take care,
Valerie

Im still on Lyrica and take 675 mg per day, tryed to lower the dose and it made me feel terrible, back to my 675mg but are going to go on neurotin insted, Lyrica makes my appertide get too high, when I was on neurotin it was not so. Im also dealing with lot of water swelling in my feet, does any one else have that.
xoxooxoxoox
Helga

I was put on Lycria also recently at 100mg a day and I saw that one side effect is hands and feet can swell. But with me the issue is the tingling has almost gone away but now there is a dull ache in the hands and when I apply pressure the pain gets worse. I hope the info about the side effect helps:)

Marindee, Just a thought but maybe asked to be worked up for lupus. Also could be your med reaction. Dr. Shawn

Nate was on Neurontin, Oxy and Norco as well as various anti depressants when he was hospitalized.
He has since had his Neurontin nearly tripled and has been taken off the other pain meds and put on Tramadol by the Pain Clinic. It made a huge difference in his amount of pain and his mood.
His back pain got better and Tramadol does not make him dopey. It just kills the pain and has a nice effect on his Seratonin. Thats always good.
Trudy, Natesmom

It’s been a year since my last entry here. I see that it’s no more cheery now than it was then. Still it’s the only place where anyone understands what it’s like to be me. I’m over three years post GBS onset. My residuals have been constant since the day I checked out of the hospital. My neurologist has cut my visits down to less than once a year because she says there is nothing more that can be done for me. I am assisted with a cane when in public in the hopes it saves me from the embarassment of falling down. I have been on 5400mg of Neurontin daily for nearly three years. One month I cut back to 900 but wish to never relive that painful episode again. My feet are the worst, feeling like pins and needles and the size of basketballs. My whole body tingles constantly, hands and face being the worst. Mornings, upon waking, are the worst. My balance is poor and every exertion quickly causes tiredness. I’m lucky if I can cope for an hour shopping before having to rest the remainder of the day. If I get out for longer then it takes days to recover. I havn’t been able to drive for nearly three years and most likely won’t ever again.
Now, considering all those GBS derived neuropathies try to imagine severe Juvenile Diabeties on top of it. I take one unit insulin for every five grams of carb intake and forty six units of Lantus every night. I believe I could handle the GBS residuals forever but the diabetes is killing me. When my blood sugar gets low I just fall down and can’t move. It is the scariest feeling ever. Some days I think I……(never mind). If it weren’t for my ageing mother assisting me I doubt I would be enduring all this. Now I’m depressed again and reminded why I stopped coming here a year ago.

Michael,

Im really sorry you feel that way about the website. Obviously there are posts that ask for help and are depressing, but I think you have failed to look at the site as a whole. There is “On the Lighter side”, which has some fun posts. Not only that, there are a number of threads that discuss celebrations, accomplishments and many other interesting things. This site was started by the Foundation as a means of support for patients who have problems and questions, so yes, the main content is bound to be depressing. Many of us post on here, not only because we are familiar with GBS/CIDP, but because we want to try and help others and be of support to them – It is wonderful to know when we have helped a family member or patient out in some [B]small[/B] way – and they often come back to say so.

I know that those who post on the forum regularly feel a camaraderie and bond that is very strong, that in itself is a boost to ones spirits.

Please try to visit more often, im hoping you will change your mind 🙂

All the best

Sometimes the posts look depressing but on the other hand, what I have learned here is invaluable. I have learned more here than any doctor, book, nurse, etc could tell me. This site is made up of people who have GBS, and live with GBS.
Just reading their posts has made it much easier to understand just what GBS is, how it works and what happens to your body when you get it.
I have learned about what medications work, treatment options, daily activities that can help, orthopedic aids, what kind of doctors to see, who is nearby us that we can talk to, all the variations of GBS and CIDP, and most of all REAL PEOPLE here talking to each other.
There is a lot of info on the Internet to read and I have but coming here to interact with patients and caregivers like me is a very good thing.
Nate’s own Neurologist, the head of the Neuroscience Center told me he comes here to read posts. To me, that says a lot about this place.
It can’t be bad if experts come here.
Trudy, natesmom

Michael,
I just started posting the last month or so. Yes, you get depressed, but not from the site. You are already depressed about your physical problems. I get depressed but I am on medication for that also. This site has helped me more than I can ever say. I feel everyone understands the residuals that I am having and don’t judge me because I don’t look sick.

I have been coming here since my onset in 2004. This site was an island in the storm and taught me much that no one else would talk about. The hospital staff wouldn’t talk to me because they new how bad off I was and wouldn’t tell me it was permanant. I was content to deal with the GBS but a month later I had an 800 blood sugar and found out I had Diabetes 1. All I had learned about GBS and dealing was tossed out the window. Even though I tire easily and can’t hardly walk I feel the diabetes is worse and the two together is just near impossible to live with. I have searched and found no one with both of these together (type 2 doesn’t count). Feeling alone in this is at times is overwhelming.

michael, hang in there buddy! what are you taking for your pain? take care. be well.

gene gbs 8-99
in numbers there is strength

Hi,

Michael have you gone to a pain clinic? That was the best thing I ever did. I am now on Fentenal patch and vicodin and Cymbalta for depression and pain. Since my last blood test showed that my liver levels were doubled, I cut down on vicodin as much as I could.

I know that you are having double the problems than I have. Did they ever suggest stretching your muscles to help reduce the pain? I have to stretching exercises that make a real difference in my pain. It is just a suggestion, because I have tried just about everything there is, not only in medication.

Please keep returning to the forums, there is support here and maybe a few suggestions that might help a little here and there. I have found a lot of help and just knowing that I am not alone helps me.

My hope is with you,
Judy

This site has helped me a bunch.I appreciate life everyday now. Why if you were still in icu and paralized thru and thru and on the vent, and having someone to turn you when they got time, and not when you wanted turned. I remember those days all to well, and yeah, the Drs did give up on me. My hip bones felt like they were punching right thru the skin and would have given anything for someone to turn me on my side. Whatcha gonna do Michael when things get worse for you ? Oh yeah, just wait and there is a good chance we all will get worse when the years start pileing up on us. It has started for me and I am afraid of all of the above coming back on me again as I get older. We don’t know what is gonna happen to us before we leave this old world; so enjoy each and everyday and all your friends and family as if this is the last day of your life.Take care all my friends.
God bless,
Drummer