Question about burning pain

hi Jessicah
3 months is a very short time in the span of all this. Burning pain/tingling/numbness symptoms that seem to be “worse” are normal. IF it gets way worse get back to the dr. But it is not uncommon to feel like things are more uncomfortable than they were even a week before. I went thru ups and downs during “recovery”, still do actually (will be 4 years in july). Was considered a more or less mild case like you. Every case is different of course, but again unless you feel like you are getting way worse, just keep in mind your body has just been to hell and is on its way back. There were even times (way less often but still comes up) that I was so scared it had come back, I was in tears and afraid to go to the dr. My personal rule of thumb is to see how I feel in a couple of hours. If I am worse, I would definitely call or go in. If I am the same or a bit better, I ride it out. This stuff is pure hell!

I read that you have GI issues. I have developed problems as well since onset…I swear I wouldn’t know if I was truly sick with something or if it was residuals on most days! Do you go through the “brain fog” too?

Like I said, 3 months is a very short time span. You are probably in the “recovery” or “plateau” phase right now. Things are stable but you will feel like crud for a while more. By the way, welcome to the family. A ton of info here, a ton of great people, and you are definitely not alone.

Hi Jessica, do you take anything for the pain? Some take lyrica and have great results, others neurotnin. I have no experience with either but am reporting on what has been the standard for some on the site.

Jessica,
I can offer you no advice on supplements as this is a new venture to us. Elmo, Markens and Dick S are knowledgeable about supplements (sorry if I forgot anyone) From an observation point of view, a family member took the gaber. for another nerve issue and it did take a bit to get used to the tiredness,dizzines, but was eventually able to overcome it and slowly increase the amount to get the best affect. As well, when the family member used the lyrica, it took a while to adjust and he was fighting tiredness and weight gain. The relief from the pain was worth the side affects to him.
Just a mom and no experience in gbs (briefly, as it was our first dx for six months) but it may be prudent to document any new symptoms and increased symptoms so that you can track or graph things and be alerted to possible cidp. That was what I did after the 2nd month of our gbs dx and our symptoms were changing, reappearing or getting stronger. Eventually another ncv/emg was ordered for a comparrison to see if things were the same or worse. BTW if you do get to the point of a repeat ncv/emg, try to request that the same neuro do it so that the measurements are the same and make sure the same nerves are tested for a true comparison. They should send you file down for a comparison tes, but don’t always, so if possible on the off chance you may need one in the future, start requesting any and all records so that you can bring them with and produce them should they not be available to the docs. Our binder has grown from a simple folder to a six inch binder.
Good luck

Hi Jessica,

I’m 18 years post GBS and have only recently (the past 3 years) experienced burning pain in my feet. I’m still not sure if it was something I was doing or the type of shoes I wore. I briefly tried Lyrica as the burning was overwhelming and frequent, however, I experienced too many side effects.

I wouldn’t want to say the tingling and burning is a sign of CIDP, however, you’d probably want to see a doctor if it continues.

I rarely have burning these days…I don’t know where it went and trust me, I’m not looking for it. 🙂

Hi Jessica: Pain is one of my worst residuals and the burning pain in my feet can be hell. It has definitely gotten worse over the last year and I am not sure why, but it is not CIDP. I take neurontin, cream and oxycontin for that and other pain. You are new to recovery so ups and downs are to be expected. Some people say that increased burning early on can be a sign that nerves are recovering though that is certianly not awlays the case.
The neurontin is a life saver for me-I could not stand the pain without it. I would suggest you take avery small dose and see how you tolerate it-even a small dose might help. There are also creams you can use. I also think burning is a sign that one has overdone things and it is a good time to get off your feet and lie down. Again I know the burning can come at any time but I find if I rest more it does help. Jeff

Hi, Jessicah, follw the very specific directions on the gabapentin. It’s a gradually up, or gradually off med, (titration) you cannot just take it on the weekends. Honestly I don’t think my daughter ever had any relief from it, although when it was first given we were promised a ‘miracle’ that it would make her sleep and relieve pain. But nothing. Just want to make sure you are not just taking it on the weekends, it does not work like that. The only thing her CIDP responds to is plasma exchange. IViG had no effect on her at all. After 2 years, 18 months since dx, she can now use her hands pretty well, still cannot walk. She is also now on cellcept along with plasma exchange and several other meds and a potent pain med that is also not as effective as she would like. 😉