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Living with Polyneuropathy CIDP, GBS, & CMT

Tingling on bottom of feet

it has been exactly one year and two weeks since they diagnosed me with GB

I am slowly recovering with lots of exercise but my legs and hip area seems to get real tight.

I am still not able to fully balance myself.

bottom of my feet tingles a lot so I use Lacrosse ball to roll back and forth and helps relieve the tingle

and pain.

I used to golf once a week and play racquetball 3 times a week and would love to go back to

this routine again.

I am 57 yrs old and hope I get to recover fully

It's been exactly one year for me this week. I had some tingling on the bottom of my feet but it finally got better. I still get extremely tight in my legs, back and shoulders especially after I do activity. Massage and PT really help me. Hope you continue to recover. Apparently this is a slow go in certain nerve areas. I've recently been hit hard with my eyes again which has affected my balance at times. Hope you get back to doing more of the activities that you love!

Thank you kindly for your support !

Tarhealing said:

It's been exactly one year for me this week. I had some tingling on the bottom of my feet but it finally got better. I still get extremely tight in my legs, back and shoulders especially after I do activity. Massage and PT really help me. Hope you continue to recover. Apparently this is a slow go in certain nerve areas. I've recently been hit hard with my eyes again which has affected my balance at times. Hope you get back to doing more of the activities that you love!

Oh wow. I guess I have a long road. I was diagnosed June 27th and was admitted to the hospital the 30th for 5 days of the Iv ig therapy. I’m so glad to read about the tightness in my feet and legs. I have symptoms feet up to my knees and wrist down through finger tips. Haven’t known how to describe my sensations so reading about the tightening is perfect.

spike, I'm 2 years 4 months out from my GBS and my feet still feels kinda numb and tingly. But I got use to it and so will you. And yes both feet and legs get tight and tired at the end of the day. Legs are not as strong as it was before but I can live with it. I'm fortunate that I can walk. I read many post on this board where other GBS patients are still struggling to walk.

I was diagnosed 7/2015. Entered hospital 7/30 and did days of IVIG. Came home 8/4 and of course still have the symptoms. Since joining this group I have learned the word tightness which is exactly what I have in my legs knees down through feet which is where the tingling is. GBS started with 2 tingly fingers and toes which I thought was a pinched nerve. But I found out differently as it progressed quickly toes to knees both sides and fingers up to wrist both sides.My balance is still off and some days worse than others. Can't walk very far till I feel like I can't take another step. I use a cane as the day goes on because it gives me some extra help walking for strength. I have gotten a lot of strength back according to PT but we are working on balance now. Just would like to have my normal feelings back. Does anyone have trouble with keeping slip on shoes or flip flops on. I cant wear my flip flops now. Its like there is no grip or something in my feet right now. And the fatigue is tough to handle, sometimes just showering and getting dressed tires me out. I know there are a lot of people that have had it a lot longer and I cant imagine feeling like this for a year +.

dora, what you experienced at the beginning is exactly what I experienced. Tingling in the finger tips and toes, then progressed to feet to calves and knees. From finger tips to elbow to biceps to entire arm. By week 2 into my GBS, I was paralyzed from the neck down. Had to be intubated for 9 days. My recovery was nothing short of miraculous. My neurologist gave me a recovery time of no less than 2 years due to the severity of damage to my nerves. I came home in 3 months. Was able to stand and walk with a walker, then cane, then unassisted by the 5 month. 2 years and 4 months, I'm about 80% now. I can live with that. Feelings in both my hand and most of my feet have returned.

Recovery will come, just don't quit and don't over do it.

I was diagnosed in August 10 of this year I was in the hospital for a week receiving IVIG transfusions since then I was slowly progressing in my recovery until this last week I was feeling weak again with tingling pains and plenty of muscle spasms so this morning I took a hot bath to relax and when I was through I found I couldn’t move my legs and had to crawl out of the tub and call an ambulance when I got to the hospital the Nero said the hot water aggravated my symptoms I had no idea heat would do that, I can move my legs now and will be going to PT in the morning, just when I tought I was out of the woods here I am again. I am so glad I found this gbs support group it’s comforting to know I am not alone and I can relate to many of your comments.

I am 7 yrs out from having had an acute form of GBS. I too have residual damage. My most excellent Neuro told me last week that at times when you might wonder whether things are starting up again symptom-wise d that that is NOT the case. It is because of the damage done to the nerves muscles from the GBS which may prove to be permanent.

That said, it isn't to say you can't regain function again. You just might not be able to realistically get back to the level you had before the GBS hit you.

No idea what sort of Rehab you had a year ago but most Insurers won't cover Rehab for an indefinite time period. Intermittent evals are a different story though as long as it can be medically justified and directed by an MD.

Have you tried any Pool based exercise classes in the area where you live? Being in water is very soothing and you can actually float a bit so you aren't weight bearing all the time. These classes also use balls for specific exercises so you may want to give that a try. Check around in your community to see what might be available.

Don't Not try golf which at least is less physically demanding than racquetball to sort with. Try it and see. I would even suggest trying a Mini Golf place to start and see how you do as its not only your legs but your arms, your hips (twisting motion with a club swing) and eye/hand coordination etc that are also involved.

Your exercise tolerance for past sports you enjoyed doing is going to be waaay down in the beginning. Expect it. The difference is Don't Try to muscle through (pardon the expression!) doing it for the sake of. Damage to the nerves and muscles to some degree more likely than not has occurred. If you push as you used to be able to you could well end up in a World of Hurt . Try going for therapeutic massages, focusing on your problem areas- the muscles in your legs and those that support the hip.

I also noticed very recently I have a leg length discrepancy as identified to me by the Massage Therapist I go to see once/week. It is caused because my muscles are extremely tight such that it is pulling my hips and spine out of correct anatomical alignment. Is something like this also happening to you? I had never had that before either and I am 7 yrs out so was very surprised my Chiro and Massage Therapist both pointed it out. Luckily, they can both help adjust it as well via specific stretching they do that I can't involving the affected leg.

I also strongly suggest you try finding a good Chiropractor who is experienced working with muscles and joints (mine is outstanding and also actively provides Sports Rehab level chiropractic services as well). I know Chiros in general have a less than sterling reputation as so many seem to be pretty useless but don't give up as there really are good ones out there that can offer relief and suggestions to try. Keep trying. If anyone you know is involved in semi pro or pro sports, ask them what Chiro or PT person they go to see. That's the expertise level that will undoubtedly help you the most.

I too have times when my balance is "off" and I have to be really careful so as not to fall and injure myself. It was only in the past 2 yrs that I began noticing the warning signs that such an episode was heading my way that means I have to take greater care in walking etc. Depending on the degree of damage you might have, take note of what happens immediately prior to your balance being off, assuming it isn't off on a full time basis. All the more reason to periodically get checked by a PT and a Chiro as well I may add.

Do NOT over stress yourself physically. Acknowledge you had GBS and depending on how incapacitating it was for you, realize it has very possibly changed the degree of physical stress you can subject your body to now. That is just the way it is. If your balance is an ongoing issue and its been a while since you last had a PT eval, consider asking your MD to direct one now. Do you need to use a cane to prevent against falling? Do you need more supportive shoes with custom orthotics to help with balance, you might want to see a Podiatrist to have your feet evaluated assuming an Xray of the feet that your MD can easily order for you can rule out any visible structural issues.

Everyone recovers at different speeds. Depends on the degree of damage done. What does your Neuro say based on his/her most recent exam findings? It takes time to recover from the insult GBS slammed you with. You may or may not get back to the state you were in before the GBS hit like a runaway freight train. On the other hand, there may well be room for improvement but you might be better served if you were evaluated properly first. PTs do work with patients that have balance issues too and can teach you things to try or do that might also help.

Stay strong and know there are a lot of us out there that understand exactly what you are saying.

Best wishes for a continued positive recovery (even if its baby steps).