Leg Pain with GBS
AnonymousAugust 3, 2011 at 2:07 pm
Hello, my name is Kyle Tremblay and I am new to this site and I am seeking answers about neurological leg pain. It’s hard to explain, but i am having these like pulsating tingly pains throughout both my legs, but more intense in the right leg.
I am right handed and as the GBS was coming out i noticed that for my whole body it cam out from right to left. I dont know if that’s relevant or not but it has continued to do that to this day.
My injury is a T-12 burst fracture from an ATV accident and then the GBS set in 5 days later and I went 99% paralyzed. I couldn’t move anything, i couldn’t breathe, swallow, nothing. All i could do is blink my right eye.
I am currently on a ton of ‘nerve’ and pain medication such as: lyrica, oxycoton, methadone, percassete, Dilaudid (sub-Q), Fentanyl Patch, and many more but these are the more effective ones.
So all I am asking is if anyone has similar symptoms or has had this type of leg pain, what did you do about it?
August 3, 2011 at 2:30 pm
Welcome to the site. I never went down as hard but still have leg pain. Stretching and massage helped me a lot. But I get a lot of tightness and cramping in my feet. I can walk however though my legs give out now and then. My probs with walking are more linked to equilibrium and balance.
Given your list of meds, congratulations on still being able to spell, good luck finding answers, please post anything you find
AnonymousAugust 3, 2011 at 8:40 pm
Hi Kyle, I’m 18-months post AMSAN GBS and have almost identical symptoms and take almost identical meds: Gabapentin, Lamotrigine, Tramodol, Oxycontin, Oxynorm, Fentanyl patches and Citalopram. None seem to work well and I have spent nights crying myself to sleep with the pain. I was told all the way through that it would get better, but now starting to think it won’t. I’ve been told I may end up taking similar medication for life.
I regularly see the pain management specialist, so will let you know if I ever get some relief.
AnonymousAugust 6, 2011 at 1:36 pm
Well Kyle… I hate to share this but 14 years post and I still experience dibilitating fatigue and major pain in my legs/feet. My left side has always been worse than the right and now my left foot is one size bigger than my right. When I push myself too hard, it feels as if my ankle or outer portion of foot has been sprained or damaged. Only lots of rest seems to help.
I wear compression socks now as a neuro told me I had lymph edema and I don’t really understand what that is except I need to keep my feet elevated as much as I can and the socks do seem to help during the day. I am not on as many drugs as you are, but since I just got approved for SSDI and Medicare, I will be finding a pain managment doc very soon. I usually go to sleep with a heating pad on top of my feet (with timer that shuts off at 2 hrs).
And as mentioned above, I also have a major problem with balance as I no longer have reflexes. Using a cane is extremely helpful with balance and reduces fatigue. If you have a spouse that can massage your feet and legs, that would probably help a lot!
Trying to stay positive but realistic for you… GBS just keeps on giving.
AnonymousAugust 7, 2011 at 8:22 am
I don’t know, exactly, about GBS related leg pain. However, the lymph edema is more readily explained.
Think of your lymph system as a sprawling, interconnected system of drainage canals. It is an important part of your immune and circulatory systems.
One of these canals, in your leg gets blocked. Then your leg swells. Hence the name edema.
It is important to find, and remedy, the cause.
Gosh, it’s just an example OK? A Mystery Diagnosis TV show was about a man who had leg pain and swelling for years. Tens of years. Turns out he had a parasitic infection in the past. Those critters were living in, and ultimately, destroyed his lymph system
I’m (edited to add) NOT saying anybody has that.
I am saying “Do not accept any diagnosis as ‘oh, poor me, I got so-and so, I’ll just go home and live with it.”
Study it, learn about it, fight it, attempt to cure it. Be diligent, be persistent, and ultimately, be successful.
The problem, as I’ve lived it is, that a doctor says ‘oh, you’ve got …fill in the blank…’ They give us a name, we go home and we go back to watching TV, or whatever way we pass the time. In the meanwhile, a chance to find the real problem is slipping away.
AnonymousAugust 7, 2011 at 9:18 am
Thanks for the info yuehan! I have looked up on the mayo site and see where the parasite thing may be real. I’ve just been approved for SSDI and Medicare, so my first project will be getting this lympedema looked into more. What type of doc do you think I should go to? The neuro that told me that recently was a retired volunteer doc at a community center so I’m probably going to have to start with my regular doc.
I appreciate your info and sharing the need to find the cause! Thank You!!!
P.S. About 12 years ago when I first started seeing my left leg getting bigger, my regular doc ordered a doppler scan which showed nothing. However, I have had an elevated wbc at about 17,000 for many years. Hmmm…
AnonymousAugust 7, 2011 at 12:22 pm
Thank you SOOO much for the interest and information. I appreciate it so much. Yuehan – thanks a lot. I am now changing my family doctor to a pain management specialist and i will let you guys know what he says to help you with this pain.
quick question— i have swollen lymph nodes in my groin. Do you think that would have a major effect on this type of pain?
AnonymousAugust 7, 2011 at 3:11 pm
It’s time for the disclaimer. I’m neither a doctor, nor in any medical related field, my own illness excepted.
No matter the nature and cause of your troubles, I would, first of all, keep a family doctor in my repertoire.
Second, you did not mention physical therapy. If I had any I’d continue it. If you don’t have any, why not?
Third, I’d move heaven and earth to not take a mountain of drugs, be they mind altering (addictive), pain relieving or not. Of course, you need to heed your doctors’ advice.
Fourth, I’d do everything I could to find out why any lymph nodes are swollen, and then, do something about it.
Your case is complicated. There is a lot of experience on this site. Sorry to say, I hope nobody else has yours….I know, I know, it’s not very funny, but come on, cheer up.
AnonymousAugust 7, 2011 at 8:00 pm
My family doctor isn’t the greatest…I live in a small town and he only has 4 paraplegic patients and im the only one with GBS so i need someone with more experience.
I am doing physio and I have been for a long time and I am seeing some improvements in mobility from the ATV accident but no pain relief from the GBS.
The mountain of drugs I’m on are prescribed to me by the doctor and I have made tons of visits to see him and get this pill regimen set. However there are a lot of “sister” drugs that i am taking and want to reduce, for example, methadone-oxycoton, percasette-dilaudid, and a few others. I know their different in some ways, But you get my point. Since i live in a small town it’s hard to get a refferal to go get a dopler scan done to see if they’re still swollen.
I’ve been pushed aside as a problem/patient for doctor’s and now im taking action into my own hands, doing my own research and proving my point to these un-educated doctors.
I appreciate all the help and Keep the suggestions comin. ALSO: i would never wish this pain and problem upon anyone no matter what! it is 100% terrible and i hope that there is a way to deal with it.
AnonymousAugust 7, 2011 at 8:37 pm
my first post to this website. Caught GBS diagnosis early and within 72 hours was in the ICU getting 5days of ivig treatments. Tried all over the counter pain meds once at home to no avail. Sleep meds seemed to help until I woke up. only relief came from being submerged in warm jacuzzi, no bubbles or movement, nerves quieted down after about 30 minutes of floating. also tried “accupressure” by laying on a tennis ball on my spine between my shoulder blades where the nerve pain radiated down my arms into my hands. Added heat pad and bengay type ointment also. The upside is that pain is the nerves mending….I always had better hand movement after a night of pain. This is a most unfair disease to a healthy don’t even have a family doctor type of person–striking without warning and no cure or prevention available … and so dibilitating. I also go into the pool and work out (so to speak) everyday which is helping to restore lost muscle in a comfortable weightlessness that the water provides for ease of movement. Be of good courage and try the water…I have read that most people fully recover from GBS in time–patience.
AnonymousAugust 14, 2011 at 8:32 am
Legs feel heavy, it gets difficult to stand up or climb stairs, to walk or stand. The patient may have difficulty holding and manipulating objects, such as buttons and toothbrushes. Arms feel weak and the patient can no longer lift heavy objects. The weakness may be accompanied by pain and muscle spasms. Constipation is also often a problem, due to the reduced activity of the intestines, change of diet, weakened stomach muscles that resist efforts by the patient to express the intestinal content.
About 28% of patients with the syndrome remain able to walk unaided.
AnonymousDecember 14, 2011 at 6:14 pm
It has been a long time since my last post but that is because I have been waiting for a solution to this problem and still HAVE not found one. I have had an MRI done, tried Reiki therapy, meditation therapy, and many other things and I still haven’t had, since August 29, 2009, a day without leg pain. My pain specialist that I am seeing has tried increasing my methadone, no more oxycoton, and fentanyl patches. Still this issue is not resolved. I am on 15mg of methadone 3x/day and still increasing at his advice and still it hasn’t helped. I have tried multiple creams to help with this, but no luck yet.
PLEASE if someone has had positive results from ANYTHING please let me know. I am in desperate NEED of relief.
I am trying a new cream now called “zostrix” and if anyone has used this before and has any advice or feedback from it please let me know. If others are interested in what it is, it’s “active” ingerdient is Capsaicin 0.075%. Here is the Wikipedia Medical help for Capsaicin:
December 16, 2011 at 3:49 pm
Tremblay, I know the leg pain you’re dealing with. I was diagnosed with CIDP in May. The pain was so severe my body would tremble.
I was on heavy medications I’d get from the pain management specialist prior to getting a diagnosis. I went to two different pain management specialists, by the way. When I went to the the second one, I distinctly remember the expression on the physician assistant’s face. She looked at me intently and told me in a very concerned voice that the medication the other doctor had put me on was VERY strong.
I never refilled it nor the other medications I was on. Two reasons for that. One, I was so afraid to get addicted. And two, they did nothing to relieve the pain. The only reason I took them was because they’d knock me out for a couple of hours at night. It would be the only two hours in an entire day that I’d be unaware of the pain. Had I not had the responsibilities that come along with being a mom I would have probably taken these meds just as prescribed. But I couldn’t for obvious reasons.
I went to my naturopath and he prescribed a slew of natural products. I’m listing a few of the ones I’ve been consistently on. There are others I don’t take anymore, and a couple of new products he’s added recently. The following I’ve been taking for the last several months. I take Tumeric, Alpha Lipoic Acid, Kudzu, Evening Primrose Oil, and St. John’s Wart. One of the ones I recently started taking is called Mycoplasma. Supposedly this is to wipe out the virus in my body, though, truly I haven’t done enough research to know much about it. The Kudzu and St John’s Wart I thought was a little bizarre as I felt it was unrelated to my health. But he asked me to trust him, so I have.
I have very little pain now compared to before. Notice, I still live with pain but it’s manageable. I take no pain medication; not even Aleve, Tylenol, or Neurontin (that did nothing for me.) I no longer use ointments as I had before. I’m feeling better little by little. My legs have also gotten stronger. I still don’t trust that I won’t fall so out of the house I still use a wheelchair and inside the home a walker. But truly I can walk, though wobbly. I also have bad balance so I need to be careful. I think I need to address this next with my naturopath.
I’m learning that if I push myself, and not allow good rest throughout the day I will hurt more than usual. My legs on occasion will also swell if I don’t take the time to rest. (Taurine is another natural product that works really well for the swelling.) Since I feel much better and have more stamina rest is something I have to remind myself of now. I do get tired and still can sleep for hours on end. I don’t complain, though, because before, the pain would keep me up. So sleep is welcoming.
Keep in mind that aside from the Mycoplasma, I’ve been taking all the natural products I listed for about the last 5-6 months. Please don’t think your results will be immediate either, although I did begin to feel a teeny bit of relief within the first week or so. It has been a very slow but steady process.
I truly feel for you. I have great sympathy and empathize. I know what it’s like to live with so much pain that concentrating on anything else is almost impossible. I do hope you find something that works for you, too. If nothing else do try the Tumeric as I keep reading and hearing on television programs that it’s really good for pain.
AnonymousMarch 4, 2012 at 3:56 pm
I have tried every med there is and have found that an ice pack between my legs does the trick for me. The ice seems to dull the nerve pain by cooling the blood traveling down my legs to my feet. Try it!. It might help you too.
Take the rest of the day off,
AnonymousMarch 5, 2012 at 3:05 pm
My right arm is so numb and painful and is exacerbated with minimal activity, even activity not involving my right arm. No meds help. After trying many things I found if I ice my right tricep it greatly helps with the arm and hand pain/numbness. Sometimes I have to ice it twice a day, sometimes 8x/day. My opinion is if the medication is not helping then wean yourself off of them. If you are on heavy doses of narcotics do not try to wean yourself off of them as it could be dangerous, get medical help.
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