Leg Pain with GBS

Hi Kyle

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

Cheers:)

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.

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.

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.

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…

You are welcome, Chrissy.

A good place to start would be with an Immunologist. The TV show lymph system case (as I recall) was ultimately solved by an Infectious Disease specialist.

Good luck as you continue to follow up on this.

Hello Kyle,

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.

Good luck.

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.

Hi Texasgal.
I had GBS in Sept of 2004. I have pretty much recovered most of what i lost, and it sounds like I had it a little worse than you, so ……………u should recover nicely. 🙂
I am also from Texas (Joshua)……where are you from??

Per

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.

GH, he may be quoting from a list, or his own situation, but he’s also quoting from all of us.
Our own posts say the same thing.

[COLOR=”Green”][SIZE=”4″]DU just ignore him maybe he will go away
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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.

Take care!

Claudia

Hello all,
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,

Rob

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.