Guillain-Barre Syndrome GBS

Brain and nerves
21

Hi Melanie!

No problem. My pain has changed throughout my recovery. When my problem first started I had numbness, tingling and that "buzzing" sensation in my legs. It literally kept me awake all night. That burning pain moved up my spine and caused tightness in my neck and shoulders that later began to ache. As my burning pain went away, I did get pain deep inside.  Is your pain confined to one area? My pain would jump around to different areas every few days or sometimes hours. Sometimes I would have deep pains internally like in the middle of my body where I had not had trouble.  I would kind of worry and wait and it would disappear.  Now I don't get that anymore.

I would also get pain in my back after standing too long once I was getting my strength back. My whole back would tighten up to compensate for the weakness from the prior nerve destruction. My entire back, neck and shoulders would hurt after standing for 4 or 5 hours. Then my back would hurt so bad when I layed down to sleep. I could not find any way to lay that didn't hurt. The PT worked to teach me how to relax and stretch my back and body so that I could get out of that pain cycle. I would stretch over this big yoga ball multiple times in a day. It has really worked for me. I am no longer on any anti-inflammatory or pain meds. I just dropped my PT down to once a week this week. I'm getting so much better. She gave me more exercises to strengthen my core. Ones that I could do at home. Seems simple but I'm pretty wobbly so it must be good for me. She has me doing something called "dead bug" exercises. I would not start anything like this too soon because it is a hard work out but might be good for later down the road. I just started doing them today with 1 pound weights on my ankles and holding 1 pound weights in my hands.  

And it sounds like you have your hands full with 5 children! More than me with the energetic coon hound! Hopefully she won't sprint at the beginning of the race and I can keep up. I have 2 kids in college and one wild puppy. Glad I can take her out now and visit my kids in school. Before, I could not make the ride sitting in a car. Now, I can drive myself.

You will get there. Just don't give up! Good days are on the way!! And feel free to ask me anything anytime. I don't mind at all!

22

Hi Melanie! So I have a question for you. Have you noticed any sensitivity just below the surface of your calves? One thing that I had that has not gone away is a sensitivity just below my knee cap that is in the front part of my calf.  I didn't pay much attention to it when I was suffering with pain and other bigger problems. It doesn't seem to affect my strength but the area of sensitivity seems to have increased since I have been running more and I hope it is not something I need to be concerned about. I asked my neurologist but he didn't know or seem too worried. I guess it's a small thing compared to where I had come from. I had it early on in one leg then that got better and now I have it in the other leg. Just wondered if you had encountered this strange nerve effect.

23

Hello Tarhealing!

Sorry that it took so long to respond, but for some reason I didn't get an email notification until just now...Anyway, when you say sensitivity, is it to the touch? I do know that I have many instances where my skin feels hot and cold all at the same time (strange feeling) but to be honest, the pain deep in my legs can be so bad, that I don't tend to notice much else. I imagine for you that after some nerve injury the small fiber nerves may still be healing and causing all kinds of sensations?  If it's moved, I tend to think that it's just part of the healing process? I'm not a doctor of course, but maybe?  

I saw my physiatrist on Weds. and she is now concerned that my calf pain may be blood clots (yikes!) so off for a doppler on Monday.  Of course, I'm all spun up and worried about that now!  Not to be a pest, but do remember calf pain right now your calf -- sort of in a straight line. I feel the need to massage my calves constantly as I "think" it's muscular pain?  Goodness, always so much to worry about!

Oh and another question for you  I think that my pain/ moving problems are descending down my legs....by that, I mean I feel that the worst areas are getting lower down my leg? Did this happen for you? I just wondered that if it initially spread up that now it's healing down? Does that make sense? My feet seem to be having a lot of trouble and just feel so odd when I try to walk. Oh well, I'll just keep at it!

Oh and my doc still wants to wait on the PT but thinks swimming might be great! Not too sure if I'm brave enough yet...but hopefully soon!

Here's to healing!

Melanie

24

Hello Tarhealing!  Hopefully it's a great Monday for you and you're escaping this cold weather. It's supposed to be -5F here tomorrow with the wind....brrr! Cold for this time of year!

Anyway, I hope you are still moving forward? Things here seem to be moving in the right direction (God willing) and I've managed to walk around the main floor in a loop a few times on my own! I still feel wobbly and quite light headed (did you get that, too?) and my legs hurt and burn a bit after use, but hopefully that's ok?  I was wondering, when you started to regain some function, did you get pain and burning, too? And I'm EXTREMELY stiff! Yikes. My legs, esp below the knees where I was the worst affected, are still pretty much bolt straight, so I look a bit funny when I walk. I don't know if that's all part of the healing process or just stiffness from lack of use?  Did you also have stiffness?

As I see some progress though, I feel as if my frustration is growing because I expect to see progress every day and of course that doesn't happen. I've worked them hard these last few days, so today they feel decidedly weak and wobbly. Ugh.  I'm just hoping that I don't go back to zero again.  Oh, and no DVT in my calves. Phew!  Well, that's probably enough questions for one day...

Hope things are well for you!

Melanie

25

Hi Melanie! I just got back from the gym and it's going great. I did sit ups without trouble for the first time and ran on the tread mill for 3 miles. I am seriously considering jogging a 5K on Saturday before my town's Christmas parade. This is a race I've done many times and love. I won't win anything but feel confident I can finish without hurting myself. I'll let you know. That's great about your walking around. My legs did hurt and burn especially below my knees. So did my back after standing-burning, pain, & stiffness-more with activity. I had lots of muscle twitches too but they are almost gone. The stretching really helped me with the stiffness, burning, and pain and still does. Even now, I slowly pedal on the recumbent bike without resistance to stretch out my legs and lower back both forward and backward for a few minutes each way-it's something my PT showed me. It really helps before I run on the treadmill.

Dont get discouraged when you get weakness after doing more because that's the way it worked for me. I never went back to zero again so I bet you will not either. Glad no DVT too! Watch the swimming, I tried but it was pretty strenuous on my back and my core seemed to take a real hit that I did not realize at the time. Not sure if it was from being out of commission for awhile or nerve damage as well. But the pool walking is great because the water supports you but don't do much because it takes a toll and doesn't feel like it when you are doing it until you get out and your legs are weak. If you do, make sure someone is there with you. Water is nice because it supports your body.

And that sensitivity is better in my calves, still there but better. My hands did go numb & tingly while I was driving the other morning when I had to go out early with my daughter and it was so cold outside. The PT told me that both extreme cold and hot weather might bring back some symptoms. Luckily, it went away after about 20 minutes of driving. I take it in stride now since I've been used to so many random strange symptoms that disappear. I'm just glad I'm getting better and back to my life. I am glad that you are making progress! Stay strong & positive!!

26

You did 3 miles on the treadmill?? Oh I'm sooooo jealous!! But good for you...yaaay! I miss working out so much, it's crazy. I've told my husband a 100 times already that I will never, ever take walking for granted ever again. It really does put a new perspective on everything. It's hard to imagine running 3 miles from where I sit now, but God willing soon enough! I must say I'm surprised at how quickly I'm losing muscle tone -- in my legs of course but also in my abs.  Hopefully I'll be doing crunches soon enough.

I'll have to try the recumbent bike for sure.  The stiffness is really quite incredible and I find that just flexing/pointing my feet helps (although that still sets my legs to burning.)  Bit by bit. Is that the sort of thing your PT would recommend to ease into things?  It's funny what you said about muscle twitches, too.  I've noticed those at night especially.  I mean, I know many people twitch as they fall asleep, but I seem to be doing it a whole lot more than I used to!

And yes, my back aches terribly, too.  Actually the worst is my neck and shoulders -- which has left me with a rotten headache! -- but I think it's because when I try to walk, I am tensing up so much everywhere without even knowing it. My arms do "go funny" from time to time -- weak and sort of numby (is that even a word??) -- but mostly during the night.  It used to terrify me, but I'm trying to roll with it now and not stress so much anymore. And a 5k? Wow! That's truly amazing! No doubt your pup will love to do it, too. Keep me posted if you manage it.  

And thanks as always for all of the positivity! This has been the most difficult, frustrating and frightening thing I have ever been through. One day, all going well, it will be a distant memory for both of us!

Melanie

27

You did 3 miles on the treadmill?? Oh I'm sooooo jealous!! But good for you...yaaay! I miss working out so much, it's crazy. I've told my husband a 100 times already that I will never, ever take walking for granted ever again. It really does put a new perspective on everything. It's hard to imagine running 3 miles from where I sit now, but God willing soon enough! I must say I'm surprised at how quickly I'm losing muscle tone -- in my legs of course but also in my abs.  Hopefully I'll be doing crunches soon enough.

I'll have to try the recumbent bike for sure.  The stiffness is really quite incredible and I find that just flexing/pointing my feet helps (although that still sets my legs to burning.)  Bit by bit. Is that the sort of thing your PT would recommend to ease into things?  It's funny what you said about muscle twitches, too.  I've noticed those at night especially.  I mean, I know many people twitch as they fall asleep, but I seem to be doing it a whole lot more than I used to!

And yes, my back aches terribly, too.  Actually the worst is my neck and shoulders -- which has left me with a rotten headache! -- but I think it's because when I try to walk, I am tensing up so much everywhere without even knowing it. My arms do "go funny" from time to time -- weak and sort of numby (is that even a word??) -- but mostly during the night.  It used to terrify me, but I'm trying to roll with it now and not stress so much anymore. And a 5k? Wow! That's truly amazing! No doubt your pup will love to do it, too. Keep me posted if you manage it.  

And thanks as always for all of the positivity! This has been the most difficult, frustrating and frightening thing I have ever been through. One day, all going well, it will be a distant memory for both of us!

Melanie

28

You will get there with the running. I was exactly where you were. I would have never believed that I would be where I am today after all of that. I lost my muscle tone too and I just did crunches for the first time. Be careful with those, they are hard on the back. My PT told me that I should consider adding the pool walking back into my workout routine. I think that I will to keep strengthening my core although I really just want to run. Guess I don't want to overdo it and backslide. My neck and shoulders were also so stiff and it caused my head to hurt too. My PT said that my dura was tightening up and it would affect my lower back up to my shoulders and neck then to my head. She had me buy a large yoga ball and hug it and rock side & side and back & forth. It helped make my back feel so much better. She also had me sit on it and do small rocking side to side and back & forth while I would watch tv. This is an easy way to strengthen your core without doing agressive activity. She said that you have to retrain your body not to tighten up when it gets tired with this from the damage so that it won't get into a pain cycle. You just do easy stretches.

It's so good that you are rolling with the weird feelings. That has helped me relax more which in turn I think has helped me get better faster. I was so afraid and frustrated too. But you are getting better. This thing is just so slow with recovery. Before you know it though, you'll get there. Just take it a little at a time and don't get too frustrated but keep slowly working at it and pat yourself on the back for your strides no matter how small they seem. They are the small steps that will lead to your recovery! I'm excited about the race and hope I don't cry when I cross the finish.

29

Well, if you don't cry, I might! Such a huge accomplishment! But I know how you feel. I think I'll cry when I manage to walk to the mailbox on my own. It's not that it's a long distance, but our driveway is quite steep and there is no way I could walk on any kind of incline yet.  Have you managed to get there? 

Thanks so much for the PT tips.  Your PT sounds great, by the way.  We actually have a yoga ball, so perhaps I can try some of the things you mentioned? The headache thing has become pretty awful as it's been about a week now  That said, I think I might be nursing a sinus headache,too!  I need to keep stretching and hopefully that will help!

Things on this end have been moving forward with faster momentum, which I hope and pray keeps up! It's amazing how far I;ve come in the last week, so I hope that trend continues!  I'm walking more around the house and getting up the stairs mostly on my own, but getting down them is still tricky.  I can't bend at all, as there seems to be weak and wobbly feeling behind my knees, but hopefully that will change.  I keep reminding myself of the progress as I feel as if I should be normal again and of course I still have a long way to go.  I may try driving this weekend...I'm a bit nervous because if I can't drive yet, I know I'll be depressed.  But here's to hoping it all goes well! My folks are here now to help (up from NC as a matter fo fact -- they just retired down there last month!) which is great. They say the see a huge amount of progress since their last visit, so that's great to hear. Let me know how that race goes! I'll be cheering for you up here in PA!

30

Did you manage to race? I'm not too sure if it was for this weekend, but I cheering loudly for you up here in PA.

I just had a question for you....how did you manage emotionally to cope with the bad days after you had had good ones? I know you mentioned that when you went back to work, it would take days to recover again.  Did you ever just get so down and depressed?  For the most part, I have made some major headway this week (yaaay!!) with more and more walking every day.  I was really beginning to feel and believe that this was going to completely resolve in my heart and then today hit.  I've certianly been pushing myself a lot these past few days, but today I feel as if my legs have gone backwards again (very hard to walk at all) and boy do they hurt!! An awful deep, achy pain from the knees down in both legs...it was so bad that it kept me awake most of last night.  I'm trying to tell myself that's it's just because I pushed myself a lot lately,  but after several days of making huge strides forward, going backwards again is just so darn frustraing and depressing....sigh...I think I'll go back and reread your posts, as that always seems to help

31

Hi Melanie!

Your cheers must have reached me because I finished the race yesterday! I did tear up when I saw the finish line but people were high fiving me when I crossed the finish so I kept it together. I actually ran much faster than I thought or probably should have. My legs did hurt some last night and are twitching like crazy but not as strong or as bad as before so I think they will be ok. It was just something I had to do for myself but I had worked up to the distance so I knew it was something I could do just maybe should have been more conservative. I usually get caught up in a race. It's just my way even if it's not the smartest way. It was my life before and I thought that I would never have that experience again so I was happy to feel it again even with my limitations.

And I did feel so down and depressed when I would make headway then backslide. I think it's because I wanted to feel like my normal self again so badly. It felt so good when I could do anything that resembled what I could do before then I would hate when it was overpowered again by the whole GBS thing. I wanted to keep progressing and it felt like I was regressing just when I was getting used to feeling a little good. That's the way it worked for me though. It was weeks of feeling better, doing more, experiencing set backs, feeling down, but all the while I had to remember that my rheumatogist said that the ball would bounce up but never as high as originally. That was true for me and still is at times. I had to accept that this is how this thing tends to work and nerve regeneration takes awhile. It is so frustrating but you are improving. Just don't forget it. Before my son came home from college after I was feeling better, I vacuumed my whole house. The next day I could hardly get up. I had really overdone it because all of my weird leg symptoms were flaring up for several days. My PT told me that I should have only done a room or two and spread it out over a longer period of days. You don't really think of that when you start feeling better.

I'm right there with you so don't feel you are alone. I understand the frustration with setbacks. Good news is that I think your set backs will get smaller and smaller with time like mine so keep up the hope. And give yourself time to rest but keep working to regain your strength when you feel better so you will be able to do more and more. Hope you feel better for Thanksgiving. I am thankful that we are still in the game (or race)! Can't wait to hear about the mailbox but take your time!

32

Hi Melanie!

Your cheers must have reached me because I finished the race yesterday! I did tear up when I saw the finish line but people were high fiving me when I crossed the finish so I kept it together. I actually ran much faster than I thought or probably should have. My legs did hurt some last night and are twitching like crazy but not as strong or as bad as before so I think they will be ok. It was just something I had to do for myself but I had worked up to the distance so I knew it was something I could do just maybe should have been more conservative. I usually get caught up in a race. It's just my way even if it's not the smartest way. It was my life before and I thought that I would never have that experience again so I was happy to feel it again even with my limitations.

And I did feel so down and depressed when I would make headway then backslide. I think it's because I wanted to feel like my normal self again so badly. It felt so good when I could do anything that resembled what I could do before then I would hate when it was overpowered again by the whole GBS thing. I wanted to keep progressing and it felt like I was regressing just when I was getting used to feeling a little good. That's the way it worked for me though. It was weeks of feeling better, doing more, experiencing set backs, feeling down, but all the while I had to remember that my rheumatogist said that the ball would bounce up but never as high as originally. That was true for me and still is at times. I had to accept that this is how this thing tends to work and nerve regeneration takes awhile. It is so frustrating but you are improving. Just don't forget it. Before my son came home from college after I was feeling better, I vacuumed my whole house. The next day I could hardly get up. I had really overdone it because all of my weird leg symptoms were flaring up for several days. My PT told me that I should have only done a room or two and spread it out over a longer period of days. You don't really think of that when you start feeling better.

I'm right there with you so don't feel you are alone. I understand the frustration with setbacks. Good news is that I think your set backs will get smaller and smaller with time like mine so keep up the hope. And give yourself time to rest but keep working to regain your strength when you feel better so you will be able to do more and more. Hope you feel better for Thanksgiving. I am thankful that we are still in the game (or race)! Can't wait to hear about the mailbox but take your time!

33

Hi Melanie!

Your cheers must have reached me because I finished the race yesterday! I did tear up when I saw the finish line but people were high fiving me when I crossed the finish so I kept it together. I actually ran much faster than I thought or probably should have. My legs did hurt some last night and are twitching like crazy but not as strong or as bad as before so I think they will be ok. It was just something I had to do if I could.

I did feel so down and depressed when I would make headway then backslide. I think it's because I wanted to feel like my normal self again so badly. It felt so good when I could do anything that resembled what I could do before then I would hate when it was overpowered again by the whole GBS thing. I wanted to keep progressing and it felt like I was regressing just when I was getting used to feeling a little good. That's the way it worked for me though. It was weeks of feeling better, doing more, experiencing set backs, feeling down, but all the while I had to remember that my rheumatogist said that the ball would bounce up but never as high as originally. That was true for me and still is at times. I had to accept that this is how this thing tends to work and nerve regeneration takes awhile. It is so frustrating but you are improving. Just don't forget it. Before my son came home from college after I was feeling better, I vacuumed my whole house. The next day I could hardly get up. I had really overdone it because all of my weird leg symptoms were flaring up for several days. My PT told me that I should have only done a room or two and spread it out over a longer period of days. You don't really think of that when you start feeling better.

I'm right there with you so don't feel you are alone. I understand the frustration with setbacks. Good news is that I think your set backs will get smaller and smaller with time so keep up the hope. And give yourself time to rest but keep working to regain your strength when you feel better so you will be able to do more and more. Hope you feel better for Thanksgiving. Glad we are still in the game (or race)! Can't wait to hear about the mailbox!

34

You finished the race?!! Yaaaaayyy!!!! Whoo-hoo! HUGE congratulations from up here!!  Wow, that really is something. Way to go! I hope that your legs are not too bad today?  I'm sure they'll feel a little beaten up, but remember that can happen at the best of times after a good long run!

Thanks as always for all of your support. It truly means so very much. I think one thing that is so difficult for me is that I never actaully got an official diagnosis. Like you, I think they did the spinal tap far too soon and the nerve conduction test too late (it was 2 months in!)  I'll be at the three month mark on the 26th (so Weds?) but I think you are right. I had a bad day yesterday, but that said, I still managed a few loops walking around the house and even managed to walk up the stairs a few times (going down in much harder!), so God willing that ball is indeed bouncing less and less. I've been better today and already managed about 5 loops around the main floor on my own. It's funny how I celebrate these little things...I just have to try not to focus on my "normal" as that always gets me down and just seems so far away.  Oh well, any progress is great, right?  My husband loves to run and actually went for  a run yesterday. I was so happy that he could get out and enjoy some downtime (plus it was a lovely mild day here), but part of me just wanted to cry. 

I do keep eyeing that mailbox however! Did you take you a long time to conquer inclines?  That's the part that makes me nervous. If  it were flat, i think I would attempt it, but that steep hill makes my legs hurt just looking at it! One day though...

Here's wishing you a marvelous Thanksgiving! Are you still planning that run? I think it will be a piece of well deserved cake!

All the best, Melanie

 

35

Thanks! And I am still planning the short puppy run on Thanksgivng Daysmile It is frustrating not to get the official diagnosis. But you know what it is if the symptoms fit and it follows the same recovery pattern.  I honestly think that there is much more for those in the medical field to learn about both "mild" and more severe GBS.

I am glad that you are doing so much better! I think that you will find your recovery speeding up now. It felt so strange the first time I walked outside by myself. I even remember when I walked to the end of my cul de sac. I didn't want to walk too far in case I could not make it back. When I first tried to jog, I moved so slow and didn't go very far. And it was so weird the first time that I tried to jog up a hill. My feet were barely moving. It did take me awhile but I just kept trying. Don't give up, just keep giving yourself time and stay positive! You will be running with him before you know it. The first time I tried to run, it was for 2 and 1/2 minutes and I was beat after that. Celebrate your successes no matter how small they seem. You will get there!

36

Thanks so much, Tarhealing! I just saw this as again there was no notification in my email...I just jumped on to reread some of your messages as today is a bit of a tough one.

First of all, I hope that you had a wonderful Thanksgiving!! Ours was lovely and it's been esp. great to have my husband home for a few extra days. The poor guy is exhausted!

I was doing fantastically well! The progress over the past 10 days was truly incredible (until yesterday, but more on that.) I've been mostly walking around the house on my own, going up stairs and sometimes down and yesterday I walked into the YMCA to see my 4 year olds swim lesson...a long walk through the Y, the locker rooms and around the pool. All by myself and then back again!!  I was so excited....but then yesterday afternoon I got up to make myself a cup of tea and Boom! my Legs sort of "went" again.  I made it to the couch and they just started burning, but thankfully only badly for 30 mins or so.  I keep telling myself it's just because I had really been pushing it for a week or so and when they were a bit wobbly yesterday I just ignored it and pushed through.  I'm not  back to zero, but how many days (or weeks -- ugh) back I am, I'm not too sure.  I still walked up the stairs this morning and a few more steps here and there, but it's not easy and my legs burn.  SOOOOOO depressing.  I'm just going to rest today and hope tomorrow is better.  I'm just so impatient!!

And yes, everything about my recovery seems to be GBS, right? I mean, even the onset was classic GBS so I keep telling my anxiety that that is what it is.  Perhaps I should see another neuro again? Although my physiatrist thinks the exam will be normal (as it is with her) and they won't have any answers....My arms have been very odd feeling, too, esp at night...heavy, weak, sometimes pins and needles, but I realize it may all by anxiety and tension related as I realize I am tensing up all of the time! Deep breaths!

Phew...well, sorry to unload on you (again ) It's just so wonderful to "talk" to someone who understands.  Oh, when you went backwards, would it happen out of the blue? Or was it usually the next day you would pay for it? Just wondering.

And how was your Thanksgiving run?  I'll bet the pup smiled the whole way!

All the best,

Melanie

37

Hi Melanie!

Glad to hear that you had a nice Thanksgiving. I survived my race. It started raining during the race and my dog sprinted from the start. I was afraid that I might slide in the leaves but I didn't. My hands were so tired from holding the leash. I could definitely tell a difference. She didn't quit pulling until the last half mile. She was like a ski tow rope! My legs were especially tired and have been for the last 4 days but everything was ok. I have been taking it easy since. My calves have been twitching like crazy but it's not as strong as before.

I am so glad that you have been able to do more. You even went to the Y and walked so far. That was huge! That definitely would happen to me after I started to do more. I would have the burning and feel wobbly too. My Neurologist said that the burning is nerve regeneration. I was worried because I could not tell the difference between nerve destruction and nerve regeneration but you have to remember that your nerves took a big hit from this along with your muscles and in turn your strength. You have come so far! I thought it was so hard to get a taste of rejoining my "normal" life just to backslide again into my disabled self. It was depressing and I still do it now but the backslide isn't noticeble because it doesn't hit me so hard. I think that it does sound like GBS because you are getting better. If you weren't, you would not be able to do more. I think your anxiety will get better, as you keep getting better. I think that you just have to accept that you suffered a pretty traumatic event and it will take your body time to heal from that. I didn't run for a long while and when I first did, it was sad and I did break down a few times. I actually bought a yoga tape to try to relax at home and start doing a little more and it was too hard for me. That's when I just selected what I could do and let it go with what I had trouble with. I think that's what you have to do. 

My anxiety was out the roof most of the time and I really had to work on it and trust that I could make it through this. I accepted weird feelings especially after I had done more activity and just rode through it. I would have checked it out but it always cleared up after a couple of days. I still do have weird sensitivity in my calves now if I touch my skin but it doesn't seem to affect my strength and I've mentioned it to my doctor but he doesn't know or really care so I'm letting that go too as long as it just stays that way. I guess I might have some lingering damage and I can deal with that. Someone suggested I try a calf compression sleeve for races so guess what I asked Santa for? I'll let you know how it works.

And my set backs were usually because I over did something I guess though I do remember just having pins and needles sometimes out of the blue. I had them when I started to drive my daughter back to college and that wasn't even the hand I was gripping the wheel with and it was warm in the car. It actually got better as I continued driving so go figure. 

Keep your spirits up! You will get there!!

38

Hi Melanie!

Just wondered how you are doing? I've been running and working out more. The cold weather seems to make it harder on me though. It seems that after I do more activity now that it's colder I'm stiffer and sorer after I have been sitting and have to get up. Have you noticed this? Hope you are doing better!!

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Hello!  I've been meaning to check in on you, too, but admittedly it was a bit of a rough week and I didn't want to seem too depressed or whiny. SO excited to hear that you are working out more and running, too.  As I sit here, it really gives me hope that maybe I'll get there again one day.  You know, I had read that the average recovery period period for GBS is about 7 months, so it seems you are on a great trajectory for that (way to go, you! Yaaay!) It's funny you mentioned the stiffness. I am VERY stiff in the morning in my legs and I just put it down to part of the process, but perhaps it's the cold weather here, too?  Sometimes it's so bad it feels as if my ligaments have shrunk and are pulling at my legs, but I try to do gently stretching which seems to help. Perhaps it's just our muscles regaining function again?  Of course, it may just be that you are working out now, which is great, and your body is just readjusting...I think the best part is that you're pushing it and there's very little back sliding...really great!

This week was pretty rotten for me, certainly emotionally. As I mentioned, my legs went backwards last week and I have been slowly pulling out of that..I'm not too sure if I'm back to where I was at my best, but pretty close now I hope?  There are just some days that are so DARN DIFFICULT. The neighbours across the street bought a puppy and they were out on their lawn playing. All I wanted to do was pop across the street and say hello and I was hit by the absurdity that I couldn't.  It seems ridiculous -- me who worked out all the time can't even cross the road (too steep for my legs and wheelchair.)  Then our 4 year old has been begging me to pick her up at pre-school with the other Mummys, but with all the steps, I just can't get in...it's just heartbreaking.  Sorry to sound so down, I don't mean to.  My arms also had a few AWFUL days which really freaked me out, but thankfully they seem better now.  I do have an appt. with a new Neuro on Friday, so I'm excited about that! Maybe something definitive for once? Heck, I'd take a "maybe" at this point in time!

Forgive me if this is going too far out on a limb, but if you feel comfortable enough, you can always email me at ______ (if you decided to do this, I'd then send you my "real" address)  No worries if you'd rather not!  

Other than that, I'm so happy to hear that you are doing well -- you've come so far since June!  Now, just to get ready for the holidays! Lots of internet shopping for me  Take care! Melanie

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service .

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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Shoot! I just sent you a long email, but it's being "moderated"...I'll check in soon and hope it goes through! All the best, M